Virginia Genetics Law and Policy
A White Paper
Virginia Advisory Board on
Ethical/Legal Issues Related to Genetics
As of April 30, 2004
James G. Hodge, Jr., J.D., LL.M.
Assistant Public Health Professor, Johns Hopkins Bloomberg School of Public Health;
Adjunct Professor of Law, Georgetown University Law Center;
Executive Director, Center for Law and the Public’s Health
With:
Erin C. Fuse Brown
J.D./M.P.H. Candidate, Georgetown University Law Center,
Johns Hopkins Bloomberg School of Public Health
Table of Contents
I.
Preface .................................................................................................................................3
II.
Introduction/Executive Summary ....................................................................................3
III.
The Genetics Revolution – In Brief ..................................................................................8
A. The Human Genome Project ..........................................................................................8
B. Genetic Testing and Research ........................................................................................9
C. Genetics and Public Health ..........................................................................................10
D. Forensic Uses of DNA .................................................................................................11
E. The Genetics Information Infrastructure .....................................................................12
F. Genetics and Ethics ......................................................................................................13
IV.
State Genetics Law and Policy…………………………………………………………15
A. Early Genetic Policy ....................................................................................................16
B. Genetics Exceptionalism and Property Rights .............................................................20
C. Following Dolly ...........................................................................................................21
D. A Conservative Approach – The Michigan Alternative ..............................................22
V.
Virginia Genetics Laws and Policies – A Case Study ...................................................23
A. Use of Genetic Tests and Information in Insurance.....................................................25
B. Use of Genetic Tests and Information in Employment ...............................................26
C. Use of Genetic Tests and Information in Family Law .................................................27
D. Genetic Information for Hereditary Conditions and Disorders ...................................28
E. Genetic Information in Criminal Law..........................................................................32
F. Genetic Information in Research and Technology ......................................................33
VI.
Principal Findings and Conclusions…………………………………………………. 34
Appendix A. Table of Virginia Genetics Laws …………………………………………………37
Appendix B. Text of Virginia Genetics Statutes and Administrative Regulations …………….. 38
References ………………………………………………………………………………………50
1
I.
Preface
This White Paper was prepared for the Virginia Advisory Board on Ethical/Legal
Issues Related to Genetics to assess the legal and ethical issues relating to the collection and use
of genetic information in the Commonwealth of Virginia. After briefly summarizing major
developments in genetic technology, primary uses for genetic information, and some key ethical
issues surrounding its use, the Paper explores ways various states have regulated the uses and
exchange of genetic information. A Virginia genetics case study is included to demonstrate how
current and prospective Virginia laws and policies facilitate the use of and protect genetic testing
and information in various contexts. Principal findings highlight areas of coverage and gaps in
Virginia state genetics laws compared with other states.
The Paper is based in part on my work and that of my colleagues, Professor Lawrence O.
Gostin, Professor of Law, Georgetown University Law Center, and Cheye M. Calvo, Senior
Genetics Policy Specialist (former), National Conference of State Legislatures (NCSL), from our
project, Genetics Legislation: Syntax, Science, and Policy. This project was funded by the
National Human Genome Research Institute of the National Institutes of Health (NIH).
II.
Introduction/Executive Summary
Advancing human genetic technologies is a revolutionary objective in science, medicine,
and public health for the 21st century. The Human Genome Project (HGP) has led to the
successful identification of genes and the sequencing the chemical bases in human DNA. The
number of genetic tests developed and used is rapidly expanding. In some cases, genetic tests or
hasten diagnosis (e.g., prenatal diagnosis and newborn screening). In other cases, these tests
allow for medical diagnosis where it was previously impossible (e.g., presymptomatic diagnosis
or identification of unaffected carriers of a gene). These advances allow medical practitioners
2
and researchers to more effectively assess the complex interactions between environment,
behavior, and genetics that contribute to human conditions. Public health authorities can better
identify appropriate populations to target for public health interventions. The ability to test and
precisely compare genetic samples has also permanently altered forensic science. Forensic DNA
tests allow law enforcement officials to better identify potential suspects and exonerate the
innocent accused.
The expansion of genetic technology and uses has led to the proliferation of genetic
information. A genetics information infrastructure is developing in which genetic information
(often individually-identifiable) is acquired, used, stored, and transmitted to support diagnosis,
research, treatment, surveillance, reproductive counseling, and other functions. One form of
genetics information gathering, criminal DNA data banking, has become prominent as federal
and state governments collect and store hundreds of thousands of DNA samples for criminal
investigatory purposes. Additional examples of mass genetic data collection are found in the
fields of medical services, human subject research, and public health.
These data collections contribute to ongoing national legal and ethical debates about
whom and under what circumstances genetic information may be acquired, used, or disclosed.
Individuals profess a strong need to control data uses to protect the privacy and security of their
identifiable genetic information. These data are among the most sensitive types of health
information. Individuals and members of some societal groups (e.g., religious, ethnic, or other
vulnerable populations) are concerned that the sharing of genetics information with third parties
will lead to discrimination. Discrimination can occur among health, life, disability, and longterm care insurers who are able to use genetic testing to choose who they serve. Employers may
attempt to use genetic testing results to discriminate in hiring or promotions based on a health
3
condition or other genetic trait. Conversely, public health authorities, researchers, law enforcers,
private insurers, and employers profess needs to access genetic information to meet communal
goals, protect persons from potential or actual harms, prevent unwarranted actions, or satisfy
other, arguably justifiable bases.
Balancing individual privacy and communal or other justifiable grounds for sharing
genetic information is not easy. Attempts to reach this balance are further complicated by
differing views on “genetics exceptionalism.” Many law- and policy-makers view genetics
information as “exceptional” relative to other health information. They suggest that genetic
information is uniquely predictive, different, or more personal and thus deserves special privacy
or other protections. Others posit that genetic information is no different than other health data,
and thus it should be treated similarly to all health data concerning legal protections.
Differences on how to protect the privacy of genetic information have led to a wide array
of legal responses. Genetics policy first became prominent through state newborn screening
programs in the 1960s and the sickle cell trait anti-discrimination movement of the 1970s. State
legislators and executive agencies have been highly active since 1990 in developing geneticsspecific law and policy relative to their federal counterparts. The HGP led to early efforts among
a few individual state legislators (e.g., California, Wisconsin) to develop comprehensive
genetics-specific privacy and anti-discrimination legislation. Other states soon followed. Some
(e.g., Colorado, Oregon) gave individuals property rights to genetic information and DNA
samples. In the mid-1990s, many states employed broader definitions of genetic information to
widen legal protections. In several states, however, legislatures took no action on geneticspecific protections in part due to political pressure from interest groups, health and life insurers,
and employers.
4
Animal cloning in 1997 renewed the efforts of many state legislatures regarding geneticsrelated privacy and anti-discrimination protections. Some states passed moratoriums on human
cloning. Additional privacy and anti-discrimination measures were also passed. Michigan used
a deliberative process to shape its genetics legislation. A special genetics policy commission
made up of experts in the fields of law, policy, and genetics was created to craft
recommendations for legislation. After months of public hearings and deliberations, the
commission proposed a wide range of new laws that were based on a more conservative
approach than had been seen in other states. The Michigan prototype has been subsequently
used in other states as they increasingly build on others’ experiences to thoughtfully develop
genetics laws and policies that match their states’ values and political environments.
To examine the extent of state genetics laws and policies in Virginia, this White Paper
includes a case study that evaluates genetic laws and policies in the Commonwealth as of April,
2004. This study summarizes Virginia’s statutes, administrative regulations, pending bills, and
jurisprudence relating to the use of genetic information and testing in key legal areas, including:
insurance, employment, family, prevention and treatment of hereditary and congenital disorders,
criminal, and genetic research and technology. Appendix A provides a table that summarizes
Virginia’s current statutes, administrative regulations, case law, and pending legislation relating
to genetic policy. Appendix B contains the actual text of the relevant sections of statutes and
regulations discussed in the case study and listed in the table. Principal findings as to how
Virginia genetics laws differ or are consistent with other state genetics laws include:

Insurance. Virginia differs from many states in that it forbids discrimination on the basis
of genetic testing or information in health insurance but not in disability or life insurance.
5

Employment. Virginia forbids genetic discrimination on the basis of genetic testing status
or information. Life, disability, and long-term care insurance as employment benefits are
excluded from the genetic discrimination provisions.

Privacy. In each context in which genetic information may be held, from health insurance
to criminal DNA banks, genetic information is protected with affirmative assurances of
confidentiality, descriptions of privacy procedures, as well as bans on disclosure without
informed consent. In areas such as insurance or criminal law where discrimination is a
special concern, criminal penalties may be assigned for infringements of genetic privacy.

Family Law. Virginia’s genetics policies are consistent with other states regarding
paternity testing, but lag in the area of adoption and assisted reproductive technology.
Virginia’s policies to maintain and make accessible genetic information of biological
parents to adopted children or children of reproductive technology are narrower than
provisions in some states.

Genetic Screening. Virginia maintains robust screening, reporting, and treatment
provisions for genetic diseases and disorders for pregnant women, newborns, and
children. The development of new screening tests, however, may outpace existing
policies.

Criminal Law. Virginia maintains a DNA bank for convicted and incarcerated felons like
other states, although its polices are more far-reaching than in some other states. For
example, Virginia requires DNA to be collected for those merely arrested on suspicion of
committing a felony prior to conviction. As well, juveniles older than 14 years are
subject to the same DNA sampling provisions as adults.
6

Genetic Research and Technology. Virginia is among a minority of states that has passed
laws banning human reproductive cloning. Despite this ban, Virginia encourages other
types of genetic research and engineering, including non-reproductive cloning.
III.
The Genetics Revolution – In Brief
A.
The Human Genome Project
The Human Genome Project (HGP) is an international enterprise principally funded by
the U.S. federal government and the British research charity, Wellcome Trust.1 Federal funding
was coordinated between the Department of Energy (DOE) and the National Institutes of Health
(NIH) starting in 1990.2 The HGP has now met its two main scientific goals. It has identified
the approximately 30,000 genes3 (links of base pairs that usually contain information for making
a specific protein4) in human DNA. And in April 2003,5 the Project led to the successful
sequencing of the approximately 3.1 billion6 chemical bases that make up human DNA.
Sequencing information will promote better understanding of how genetic material interacts to
produce certain characteristics and allow researchers studying a particular trait to quickly retrieve
data about relevant sections of DNA.7
Through the HGP, researchers will be able to advance understanding in several avenues
of study, such as the origin of humans, efficacy of medical treatments, and genetic causes of
diseases and disorders.8 Additional aims of the HGP include sharing information regarding its
scientific discoveries through public databases, developing better sequencing technologies and
tools for data analysis, and examining the ethical, legal, and social implications (through the
Ethical, Legal, and Social Implications (ELSI) Program).9 Project researchers have also
evaluated the genetic material of non-human organisms.10 These efforts aid in the improvement
7
of genetic research technology and better understanding of human gene function through
comparisons to non-human models.
B.
Genetic Testing and Research
Genetic tests involve an examination of chromosomes, DNA molecules, or gene products
(such as proteins) for evidence of certain mutated sequences.11 Genetic tests can: (1) confirm a
diagnosis for a symptomatic individual; (2) assist with presymptomatic diagnosis or assessment
of the risk of development of adult-onset disorders. Better knowledge of the causes of disease
may lead to more effective drugs and gene therapy techniques; 12 (3) identify unaffected carriers
of one copy of a gene for a disease where two copies are needed for the disease to be expressed;
(4) aid in prenatal diagnosis and newborn screening; and (5) be used in forensic and identity
evaluations.13 Hundreds of genetic tests already exist, and many more are in various stages of
development.14
Despite great potential, certain technical limitations inhibit the prediction of genetic
disease in individuals. A genetic test may not be able to identify every mutation of a gene and
thus may not recognize an abnormality.15 Furthermore, different mutations in a gene have
different effects. Finally, genetic tests do not measure the complex interactions between genes
and environment that contribute to almost all diseases. This restricts the ability to test for major
causes of mortality such as cancer and heart disease.16
Scientists, policymakers, ethicists, and the public are concerned about legal and ethical
issues relating to genetic testing. Some of these concerns include the difficulty interpreting
genetic information for genes that do not necessarily result in disease, testing for diseases
without a cure or against the person’s wishes, deciding when tests should be administered for
adult-onset disorders like Alzheimer’s, deciding how much choice an individual should have in
8
taking a test when that information could affect family members or potential offspring, and
determining to whom the tests results may be released. Additional questions arise as to quality
assurance and accuracy of testing. While genetic tests provide many benefits, they also provoke
concerns about how, when, and why the tests should be performed.
C.
Genetics and Public Health
Genetics testing and information may impact public health goals of preventing and
treating diseases in the population in many ways. First, understanding the role genes play in
contributing to diseases helps parse out environmental, behavioral, and genetic influences on
diseases.17 With this knowledge, public health professionals can shape their assessment, policy
development, and assurance techniques more effectively. Environmental risk assessments, for
example, benefit from new means to evaluate health damage caused by exposure to radiation or
toxins.18 Second, public health professionals promote the use of genetic tests and services where
inexpensive and effective treatments are available to advance the collective health of the
population.19 Third, public health officials conduct population research to evaluate the clinical
validity and utility of genetic testing.20 Fourth, genetic information aids in targeted screening
efforts by helping public health officials identify which groups should be screened.21 Finally,
public health officials help disseminate information about the role of genetics in health to
medical professionals and the public.22 Public health professionals are essential to translating the
capabilities of genetic tests into better population-wide health through their ability to promote
research, treatment, and education about the interaction between environment, behavior, and
genes.
Multiple legal and ethical issues must be considered before a public health strategy using
genetic tests and information is implemented. For example, what, if any, tests should be part of
9
screening programs (mandatory or routine) and why? If screening is targeted to a certain
population group, how can public health officials ensure that the group is not stigmatized by the
connection to the disease? In addition, how should public health professionals evaluate risk when
they determine how to allocate scarce testing resources? Should they focus research and
prevention efforts on genetic diseases that impact the public at large or illnesses that
disproportionately affect certain population groups? And what differences exist in the roles for
federal and state public health agencies? Important questions regarding privacy, discussed
below, also must be confronted.
D.
Forensic Uses of DNA
Forensic uses of genetic tests involve identification of individuals based on organism
tissues. States are forming a national criminal DNA data bank similar to the one developed by
the Federal Bureau of Investigations (FBI), known as CODIS,23 which contains hundreds of
thousands of genetic profiles from convicted offenders.24 Every state legally requires convicted
sex offenders to submit a blood sample for genetic analysis. Others states (like Virginia – see
infra Section VI) test all convicted felons, including juveniles. Louisiana passed legislation that
forces those arrested on mere suspicion of felony sex offenses to submit to DNA testing.25
Unlike genetic tests for medical and public health purposes, forensic DNA tests generally
examine regions of DNA that do not reveal information about an individual’s personal
characteristics or probability of disease. The term “forensic” is most often used in the criminal
setting where DNA tests allow investigators to identify potential suspects or to exonerate the
innocent accused. But the forensic uses of DNA extend into other areas, such as identification of
catastrophe victims or family relationships, such as paternity, between individuals.26 In addition,
it can aid in matching organ donors and recipients who need transplants.27
10
Technological and testing improvements have advanced to allow almost any type of
organic matter (including sweat, hair, and degraded blood) to be used to perform a genetic
analysis.28 Hand-held devices are in process of development that would allow law enforcers to
rapidly evaluate DNA samples at the scene of a criminal investigation.29 This technology may
help relieve backlogs of requested tests at laboratories. Still, significant technological limitations
compromise the ability to identify specific individuals. Existing tests involve matching only four
to five regions of DNA for the purposes of identification.30 There is a remote chance that two or
more suspected individuals will have the same DNA in those regions.31 As well, certain
population groups have more frequent occurrences of specific patterns of DNA than others.32
Legal and ethical questions must also be addressed before forensic use of DNA is
expanded, especially in the criminal setting. Should criminals convicted of non-violent crimes
have to submit to the tests? Should all suspects be tested? Should DNA tests be characterized
serve as a “smoking gun” so that a positive match almost ensures a conviction? What types of
restraints are needed to prevent abuses that compromise individual privacy?
E.
The Genetics Information Infrastructure
Underlying the proliferation of genetic tests is the development of a genetic information
infrastructure, defined as the storage, use, collection, transmission, and dissemination of genetic
information to support diagnosis, research, treatment, identification, and reproductive counseling
in the genetics field.33 This infrastructure is fueled by scientific advances that make the
discovery of new genetic information possible (i.e., genetic tests) and electronic advances that
support the dissemination of the genetic (and other health) information through Internetsupported and other electronic databases.34
11
The genetics information infrastructure has the potential to link doctors, scientists,
patients, and others to genetic information, tests, diagnoses, and treatments. Doctors need
genetic information to diagnose and treat the patient. Scientists and geneticists want genetic
research data to learn more about genetic diseases. Employers desire the information to know if
the person being hired will remain healthy and productive. Health and life insurers want it to
assess the risks of offering policies to certain individuals. Government needs genetic
information to apprehend criminals, identify military personnel, and conduct public health
surveillance. All of these entities argue that they have a legitimate claim to genetic information
shared through electronic genetic databases and other sources.
F.
Genetics and Ethics
While genetic data hold the potential to provide individual and communal benefits, legal,
scholarly, and advocacy communities express concern about the diminution of liberty interests
inherent in the acquisition, use, retention, and disclosure of genetic data. These data can intrude
on privacy interests, alter a person's sense of self and family identity; or adversely affect
opportunities in education, employment, and insurance (health, life, and disability).35 Genetic
information affects not only individuals, but also their families and ethnic groups that share a
genetic inheritance.
In response to these issues, some state legislatures treat genetic information differently
from other health data. Known as “genetic exceptionalism,” this approach is based on the notion
that genetic information is unique from other health data for several reasons: (1) genetic
information is predictive; (2) it remains largely stable throughout life; (3) genetic footprints are
remarkably identifiable; (4) genetic conditions are inherited (i.e., genetic information reveals
information about an individual's family members and future offspring); and (5) while current
12
genetic tests are limited in their capabilities, genetic information ultimately might transcend
health status to reveal predispositions, personal characteristics, and abilities.
There are drawbacks, however, to treating genetic information differently. Strict
protection of autonomy, privacy, and equal treatment of persons with genetic conditions may
threaten the accomplishment of communal goods (e.g., medical research and public health
surveillance). As more medical conditions are increasingly linked to genes, it will become
increasingly difficult to distinguish genetic data from other medical data.36 Genetic-specific
statutes may be seen as unfair because they treat people facing the same social risks differently
based on the biological cause of their otherwise identical health conditions. On a practical level,
treating genetics as distinct from the rest of medicine may enhance the stigma of genetics testing,
even as legislators attempt to remove its stigmatizing effects.37 Conversely, by focusing only on
genetics information, legislators may convey the perception that the public need not worry about
the confidentiality of other kinds of medical information, fostering complacency in an area where
insufficient protections may exist.
Regardless of whether a state chooses to exceptionalize genetic information, most lawand policy-makers seek to protect individual privacy and prevent genetic discrimination.
Individuals are concerned about the privacy of their genetic data because privacy breaches can
lead to invidious discrimination. Members of ethnic groups can also be vulnerable to genetic
discrimination if genetic research has shown the group has a higher-than-normal propensity for a
condition versus the general population.
Protecting genetic privacy and preventing discrimination are universal norms, but
providing these protections is complicated. In the health, life, disability, and long-term care
insurance industry, for example, assessing risk is fundamental.38 Insurance industry
13
representatives may need an individual’s genetic information to efficiently assess individual risks
underlying insurance policies.39 Consumer and patient advocates assert, however, that allowing
insurers to effectively discriminate based on genetic information leads to decreased insurance
options. Insurers may turn away high-risk individuals or deny coverage for the specific genetic
condition for which the individual most needs insurance protection.40 Mandatory genetic testing
imposed by health insurers could deprive individuals of a significant interest in personal
autonomy.41
Genetic discrimination is also a major concern in the employment context. Although the
extent of genetic discrimination in employment is highly debated, prominent national examples
have arisen and studies have documented many cases.42 Employers have economic incentives for
employment-based discrimination. Those who provide group health care insurance to their
employees may have financial incentives to use genetic testing to identify potentially high-cost
employees.43 Employers may discriminate against individuals on the basis of their genetic
information if they predict the individual will have fewer productive working days (or years) due
to a genetic illness or condition. Though known cases reinforce their existence, proving
instances of genetic discrimination at work is often difficult.
IV.
State Genetics Law and Policy
As early as the 1960s, state lawmakers identified the potential benefit of genetic testing to
individuals and to the public’s health. They also saw the potential for discrimination and
invasion of privacy. Legislators began to fight the misuse of testing for certain genetic traits in
the mid-1970s. The commencement of the HGP in 1990 motivated many state policymakers to
look more closely at the potential of genome science. Rather than try to limit genetic
technologies, state genetics legislation during the 1990s addressed threats to civil liberties,
14
personal privacy, and individual autonomy posed by the misuse of genetic information or tests.
Legislators attempted to avoid unintended consequences of legislation on research, medical
treatment, and public health. They drew upon early policy experience with genetic testing and
used established principles in employment, insurance, health, and property law to craft genetic
information protections.
While state genetics legislation has been aimed at preventing widespread abuses, the
technical nature of genetic science, the lack of documented misuse, and the rapid pace of
technology have each presented challenges. Legislators have had to weed through the more
sensational aspects of human genetic technologies to identify appropriate public policy issues.
For example, early genetic nondiscrimination measures narrowly prevented actions based on
genetic test results. Subsequent bills introduced more sweeping safeguards that challenged
longtime industry practices. These new laws employed an “exceptional” approach, treating
genetic information as unique and deserving special legal protections. Now a new stage of
genetics policy development is emerging that focuses on harnessing genetic advances for the
public good while continuing to implement, revise, and improve individual and societal
protections to keep pace with the ever-changing science.
A.
Early Genetic Policy
Newborn Screening Programs. State programs to screen newborns for treatable genetic
disorders first emerged in the 1960s following Dr. Robert Guthrie’s development of a system
to effectively test for phenylketonuria (PKU), an inherited metabolic disorder leading to mental
retardation unless treated with early dietary modification. Massachusetts established a voluntary
newborn PKU screening program in 1962. Mandatory programs followed in most states over the
next decade. Federal funding to support genetic screening programs passed in 1976. The 1980s
15
brought increased public health agency facilitation of various program components, greater
coordination among state programs, and expansion of conditions screened. Today, newborn
screening programs annually screen about millions of infants in all 50 states and the District of
Columbia for nearly a dozen conditions (with more proposed). Although continuing to evolve,
newborn screening remains a remarkable public health success story and presents a powerful
example for policymakers of the ways that genomic science can be used for individual and
communal goods.44
Sickle Cell Trait. Employer discrimination against applicants with the sickle cell trait in
the 1970s forced lawmakers to confront a darker side of genetic testing. Testing for the sickle
cell trait became a public health priority in the 1970s, but confusion persisted over the difference
between the sickle cell trait and sickle cell anemia. In some cases, employers tested
systematically and without consent. African-Americans were categorically refused employment
following positive test results. Employers often failed to distinguish between healthy carriers
that would never contract sickle cell anemia and individuals at-risk for the disease. In 1975,
North Carolina enacted the first legal protections forbidding discrimination against individuals
with the sickle cell trait. Florida followed suit in 1978, Louisiana in 1982, and New York in
1990.45
As genetic technology emerged in the 1980s, sickle cell trait bills led to laws that
safeguarded a wider set of traits. A 1981 New Jersey law banned employment discrimination
based on an individual’s atypical hereditary cellular or blood trait, which included sickle cell,
hemoglobin C, thalassemia, Tay-Sachs, and cystic fibrosis.46 A 1986 Maryland law banned
discrimination in health insurance based on a similar list of traits. This was the first state genetics
law to address access to health care. In the first state law to broadly focus on genetic testing,
16
Oregon in 1989 included “genetic screening” on a list of other “unlawful employment practices”
in legislation that prohibited employers from subjecting individuals to various tests including
polygraphs and breathalysers.47 That same year, Arizona forbade genetic discrimination in life
and disability insurance unless “either claims experience or actuarial projections establish that
substantial differences in claims are likely to result.”48 The measure also extended to health
insurance due to the state’s broad definition of disability insurance. Montana enacted similar
language in 1990, although its law only applied to life and disability insurance.49
A New Era - The Human Genome Project. In the early 1990s, state genetics policy was
driven by individual legislators working through traditional legislative processes. Though they
approached issues independently and applied different legislative strategies to varied ends, these
lawmakers shared a common goal of advancing human genetics science and technology by
addressing threats to civil liberties, personal privacy, and individual autonomy. Legislators in
California engaged in genetics policy debates in early 1990. The result was the nation’s first
broad-based genetics legislation, which was introduced later that year. The bill proposed to ban
discrimination based on any genetic characteristic in employment, housing, or other private
services as well as health, life, and disability insurance underwriting and rate-making for all
policies.50
Organized labor and civil liberties groups enthusiastically supported the bill. The life
insurance industry lobbied to permit the use of genetic testing in life insurance, and, once
successful, withdrew opposition to the bill. Health insurers remained surprisingly disengaged.
Business interests opposed the bill most strongly, arguing that employers did not use genetic
information, but that a blanket prohibition would block the use of genetic information in certain
circumstances in the future to promote worker safety. Although the bill ultimately was rejected
17
by the Governor, debate regarding California’s broad genetics bill led to deliberations on
genetics legislation in many states over the next decade.
The Wisconsin legislature, for example, was the first to enact a comprehensive set of
genetic protections.51 Wisconsin Governor Tommy Thompson (now Secretary of Health and
Human Services) signed a genetics bill into law on March 5, 1992 that banned genetic
discrimination in employment and health insurance.52 Iowa and Rhode Island also passed
workplace genetic protections in 1992.53 Eleven legislatures saw the introduction of 34 bills to
address genetic discrimination in 1993. Lawmakers from seven other states worked over their
bills in 1994. Growing interest, however, failed to translate into widespread law, with only three
states enacting genetics legislation during the 1993 to 1994 sessions. The great majority of bills
died in committee, most without a hearing, as sponsors struggled to engage committee chairs and
other members in the issue. Where bills did move, they did so in response to the unique political
climates of the particular state. The futuristic nature of genetic technologies and the lack of an
identifiable problem were significant challenges for genetics policy advocates.
The national health care debate of the early 1990s provided lawmakers with another
opportunity to address genetics policy. As managed care proliferated, the nation’s attention
turned to making health care more accessible and affordable. Genetic discrimination seemed
contrary to the emerging policy consensus and provided enterprising genetics policy advocates
with the opening they needed. California passed a bill to prohibit genetic discrimination in
health insurance in 1994.54 Colorado legislators took a different approach to genetics policy. A
Colorado measure prohibited any entity from seeking, using, or keeping any genetic test results
for any non-therapeutic purpose or to underwrite health, group disability, or long-term care
insurance. The law went a step further to declare genetic information “the unique property of the
18
individual to whom the information pertains,” and required expressed written consent for release
of identifiable test results.55 The property right provision appealed to a conservative Colorado
legislature, which enacted the legislation in the spring 1994 with overwhelming support.
B.
Genetic Exceptionalism and Property Rights
Key to the genetics policy debate is the idea that genetic information is special. “Genetic
exceptionalism” suggests that the uniquely stable, predictive, and personally identifiable data
encrypted in the genome of every human being is so fundamentally different from other health
information as to require special legal protections. Broad interpretations of the Americans with
Disabilities Act (ADA), which did not take a genetics exceptionalism approach, and other
loopholes (e.g., a fifteen-employee minimum for eligibility and authorization for unlimited preemployment medical examinations and inquiries) led state legislators to question the adequacy of
federal protections for genetic-specific privacy and discrimination. Oregon passed its Genetic
Privacy Act in 1995 (later repealed in 2001), granting individual ownership of genetic
information and DNA samples.56 Ownership rights seemed to grant individuals a degree of
control over uniquely personal material. However, opponents suggested that these rights would
have unintended consequences for the pharmaceutical and newly forming biotechnology
industries. They claimed that property rights threatened to hinder research and discourage private
investment by potentially giving rise to claims by research subjects on newly developed drugs
and procedures. A similar bill in New Jersey was initially vetoed by the Governor in 1996
despite near unanimous legislative support. The Governor’s veto was based on the Governors’
concerns about unintended and harmful consequences of the property right provision on
research. Once the legislature deleted the property rights provision, the bill was signed into law.
19
Even without the property rights provision, the New Jersey law represented a landmark
departure from previously enacted genetics policy. Paralleling federal legislative bills, the New
Jersey law adopted a considerably broader definition of genetic information than previous
efforts. “Genetic information” included “information about genes, gene products or inherited
characteristics that may derive from an individual or family member.”57 This definition exceeded
typical terminology used in genetics bills, focused on genetic test results. New Jersey applied the
definition to prohibit discrimination in employment and health insurance underwriting and ratemaking and to regulate the use of genetic information in other insurance lines. The law also
required written consent for any third party to obtain, retain, or disclose genetic information, or
even “release the identity of an individual upon whom a genetic test has been performed.”58
C.
Following Dolly
Genetics policy interest erupted in February, 1997, when Scottish scientists announced
the cloning of an offspring from an adult sheep. Dolly, the first mammal cloned from the genetic
material of an adult, suggested to an unsuspecting world that human cloning was possible, if not
imminent.59 Lawmakers in thirteen states introduced legislation to ban cloning in 1997.
California issued a five-year moratorium on the cloning of a human being.60 Bans followed in
Michigan and Rhode Island in 1998 and Louisiana in 1999.61 Missouri limited the use of public
funds for human cloning research in 1998. Measures following California’s effort typically
excluded from cloning research bans certain therapies derived from somatic cell nuclear transfer,
the technology used to clone.
Dolly also spurred a national debate on the ethical and social implications of genetic
technologies. Genetics protections were once again at the forefront of legislative agendas.
Legislation in 32 states proposed protections against misuse of genetic testing in 1997. Health
20
insurance protections were featured in 81 bills in 28 states. Twelve states addressed genetic
discrimination in employment. Lawmakers from 25 states proposed 41 separate bills on genetic
privacy. This extensive activity yielded results. In 1997, Connecticut and Illinois banned
discrimination in employment and health insurance.62 Arizona, Hawaii, Florida, Indiana, Kansas,
Louisiana, Nevada, Tennessee, and Vermont also addressed health insurance, and Arizona,
Texas, and Vermont forbid genetic discrimination in employment.63 In 1998, Delaware, Maine,
Missouri, and Oklahoma tackled employment and health insurance protections, Kansas enacted
workplace protections, and Kentucky, New Mexico, Rhode Island, and South Carolina addressed
health insurance.64 In 1999, Maryland revised its health insurance protections to broaden their
scope and Montana banned discrimination in life insurance as well as health and disability.65
D.
A Conservative Approach - The Michigan Alternative
Genetics policy for most of the 1990s largely presented a battle between inaction and
action. Once bill sponsors cleared legislative hurdles, bans of discrimination based on genetic
test results and special genetic privacy protection generally secured bipartisan support. The
questions typically pertained to which industries to cover – employment, health insurance, life,
disability, or long-term care insurance – and the degree of special genetic privacy protections.
Michigan policymakers introduced a new phase of genetics policy debate by questioning
how to act, not merely whether it should. Just months before scientists completed the working
draft of the human genome, Michigan rejected the more sweeping laws passed by states like New
Jersey and California, and instead began a cautious, conservative alternative for reform. For the
first time, the executive branch directly entered the debate. Genetics policy emerged after nearly
two dozen various genetics bills were introduced by Michigan legislature, Governor John Engler
formed a special genetics policy commission. The Michigan Commission on Genetic Privacy and
21
Progress, appointed in September 1998, took genetics policy development out of the legislative
arena, allowing a panel of experts to study and craft policy alternatives.
The independent Commission favored a more limited-government approach. Its’ report,
released in September, 1999, discussed nearly every facet of human genetic technologies, from
newborn screening to the use of DNA evidence for criminal justice purposes. Privacy,
ownership, and nondiscrimination sections presented far-reaching policy implications. The
Commission generally opposed an exceptional approach to genetic information. Informed
consent for genetic testing was recommended, but the group otherwise encouraged treating
genetic information the same as other health data. Property rights in genetic samples and
information were also discouraged. Finally, the Commission advocated the proscription of
genetic discrimination in employment based on a narrow definition of genetic information
focused on genetic test results, but split on genetic discrimination in health insurance. A majority
supported forbidding health insurers from requiring predictive genetic tests, but there was no
consensus on insurer access to prior test results and nondiscrimination.
The legislature quickly acted to codify the Commission’s recommendations. A package
of eight bills required informed consent for all genetic testing, banned genetic discrimination in
employment, and forbid health insurers from requiring genetics tests and accessing prior genetic
test results. Most of the Commission’s recommendations sailed unanimously through both
chambers of the legislature.66
V.
Virginia Genetics Law and Policies – A Case Study
This Part assesses statutes, pending bills, administrative regulations, and jurisprudence in
the Commonwealth of Virginia that relate to the use of genetic information and testing. These
22
laws are discussed within several key areas: insurance, employment, family, prevention and
treatment of hereditary and congenital disorders, criminal, and genetic research and technology.
As the following sections summarize, Virginia prohibits certain types of discrimination on the
basis of genetic testing and information in health insurance and employment contexts. Virginia
health insurance and employment laws and policies provide strong confidentiality and
nondisclosure protections concerning genetic information. These provisions, however, do not
apply to life or disability insurance. Virginia readily authorizes and uses genetic testing in
family law to settle paternity disputes. Laws support testing of newborns, pregnant women, and
others for various genetic conditions and congenital abnormalities. Policies relating to screening,
counseling, treatment, and reporting of genetic conditions further public health aims to reduce
the incidence and severity of genetic conditions. These activities are balanced with privacy and
confidentiality protections.
Virginia’s criminal justice laws authorize DNA fingerprinting in the investigation and
prosecution of violent crimes though the maintenance of a statewide forensic DNA bank. Finally,
Virginia regulates the use of genetic information in research and technological development.
Some activities are banned, such as human reproductive cloning. Other activities, including nonreproductive cloning research and genetic engineering, are allowed. In combination, Virginia’s
laws and policies support the usefulness and value of genetic information while protecting
individuals from abuse, discrimination, and privacy violations.
Following the case study, a table summarizing Virginia’s genetic statutes, regulations,
case law, and pending legislation is provided in Appendix A, and the actual text of the relevant
sections of the statutes and regulations discussed below is listed in Appendix B.
23
A.
Use of Genetic Tests and Information in Insurance
Virginia statutes protect individuals against discrimination on the basis of genetic tests or
information in the provision of accident and sickness insurance. Accident and sickness insurance
is statutorily defined as, “insurance against loss resulting from sickness, or from bodily injury or
death by accident or accidental means, or from a combination of any or all of these perils.”67 By
definition, this includes health insurance, but not disability income insurance or life insurance,
(as interpreted by Virginia courts).68 Additional key definitions important to an examination of
Virginia genetics laws include:

Genetic characteristic - any scientifically or medically identifiable gene or
chromosome, or alteration thereof, which is known to be a cause of disease or
disorder, or determined to be associated with a statistically increased risk of
development of disease or disorder, and which is asymptomatic of any disease or
disorder.69

Genetic information - information about genes, gene products, or inherited
characteristics that may derive from an individual or a family member.70

Genetic test - a test for determining the presence or absence of genetic characteristics
in an individual in order to diagnose a genetic characteristic.71
Virginia law forbids a health insurer, health services plan, or HMO from (1) terminating,
restricting, limiting, or applying conditions to coverage of an individual or restrict the sale to an
individual; (2) canceling or refusing to renew coverage of an individual; (3) excluding an
individual from coverage; (4) imposing a waiting period prior to commencement of coverage of
an individual; (5) require inclusion of a rider that excludes coverage for certain benefits and
services; or (6) establish differentials in premium rates for coverage on the basis of an
24
individual’s genetic information or request for a genetic test.72 In addition, these entities cannot
discriminate in fees or commissions for the enrollment, subscription, or renewal of any person on
the basis of an individual’s genetic characteristics that may relate to the disability of the person
or her offspring.73 Furthermore, any information obtained from genetic screening or testing shall
be confidential and shall not be made public or used in any way to discriminate in the provision
of applicable insurance.74 Finally, none of entities may disclose an individual’s genetic
information without that individual written authorization.75
In addition to these existing provisions, House Bill 1216, introduced in the 2004
Legislative Session, would mandate that health insurance plans cover treatment of inborn errors
of metabolism. Inborn errors of metabolism are “rare, genetically determined biochemical
disorders in which a specific enzyme deficiency produces a metabolic block that may have
pathogenic consequences at birth or later in life.”76 This bill has been continued to the 2005
legislative session. Senate Bill 650, also introduced in the 2004 session, would prohibit
exclusions in health insurance for prophylactic surgical procedures and related services for
difficult to diagnose pathologies having a genetic predisposition.77
B.
Use of Genetic Tests and Information in Employment
Virginia law protects against discrimination on the basis of genetic information or tests in
the context of employment. The definitions of genetic test and genetic characteristic are the
same as in the insurance context (above). Employers are forbidden from requesting, requiring,
soliciting, or administering a genetic test to any person as a condition of employment. 78 In
addition, employers may not refuse to hire, fail to promote, discharge, or otherwise adversely
affect the terms or conditions of employment of any existing or prospective employee on the
basis of a genetic characteristic or the result of a genetic test, regardless of how the employer
25
obtained the genetic information.79 The terms or conditions of employment covered by this law,
however, exclude long-term care, life, or disability insurance policy.80 Virginia laws also permit
judicial causes of action for employees who feel that their employer took adverse action against
the employee on the basis of genetic information or tests.81 Claims must be brought within 6
months of the employer’s alleged adverse action. If a court finds for the employee, it may award
actual or punitive damages, including back pay with interest, or injunctive relief.82
C.
Use of Genetic Tests and Information in Family Law
Paternity Testing. Genetic tests may be used to determine paternity pursuant to Virginia
family law. Paternity may be established (among other methods) through scientifically reliable
genetic tests, including blood tests, that affirm at least a 98% probability of paternity83 for
administrative paternity determinations by the Virginia Department of Social Services 84 or for
judicial proceedings where the question of paternity arises. In trial, the court may direct the
putative parent and child to undergo genetic tests to determine paternity.85 Of course, genetic
tests are not required to establish paternity. Additional evidence includes voluntary, sworn
statements or other clear and convincing evidence.86
In addition to establishing paternity through genetic tests, an individual may file a
petition for relief from a legal determination of parentage if a scientifically reliable genetic test
excluded the individual as the father.87 A court, however, shall not deviate from a legal finding
of paternity if the father has (1) acknowledged paternity knowing he was not the father, (2)
adopted the child, or (3) knew the child was conceived through artificial insemination.88
In rare cases where a putative child seeks to establish paternity of a deceased person, the court
may order exhumation of the body to retrieve a tissue sample for the performance of
26
scientifically reliable genetic tests to prove a biological relationship.89 Substantive proof of
parentage is not required for the court to order exhumation.90
Adoption and Assisted Reproductive Technology. Virginia does not require adoption
agencies to make genetic or other medical information available to adult adopted children,
adoptive parents, birth parents, or adult birth siblings. State laws, however, do provide that the
adoption agency shall attempt to provide any of these persons with genetic or medical
information if requested in writing by a physician or licensed mental health provider.91 The
request must attest that the information sought is critical and provide reasons to support the
assertion.
In the 2004 Session of the House of Delegates, House Bill 305 was introduced to provide
persons conceived by assisted reproduction access to the medical, psychological, or genetic
history of gamete donors as well as the donor’s name.92 The request may be made once the
offspring reaches majority. This bill was continued to 2005. House Joint Resolution 84 was
introduced to establish a joint subcommittee to study the regulation of embryo laboratories
engaging in assisted reproductive technologies in the Commonwealth.93 House Joint Resolution
20 was introduced in 2004 to establish a joint subcommittee to examine (1) medical, ethical, and
scientific policy implications of prohibiting the creation of embryos in vitro for any purpose
other than bringing them to birth; and (2) criminalizing the compensation, in cash or in-kind, of
any persons to induce them to donate sperm or eggs for any purpose.94 Both Resolutions 84 and
20 are pending as of April 2004.
D.
Genetic Information for Hereditary Conditions and Disorders
Newborn Screening and Treatment. Virginia has extensive statutes and regulations to
provide screening, reporting, and treatment of a variety of genetic conditions in newborns. The
27
stated purpose of these laws is to “prevent mental retardation, permanent disability, or death”
among infants.95 All infants born in Virginia must be screened for a series of genetic and nongenetic conditions (e.g., biotinidase deficiency, phenylketonuria, hypothyroidism,
homocystinuria, galactosemia, congenital adrenal hyperplasia, medium-chain acyl-CoA
dehydrogenase (MCAD or MCADH) deficiency, and Maple Syrup Urine Disease). Some at-risk
infants may also be subject to sickle cell testing unless the parent objects for religious reasons.96
Screening tests are typically conducted by the health care provider who delivers the baby
(nurse, midwife, physician) or the first attending physician. House Bill 1133 enacted in the 2004
Session directs the physician or certified nurse midwife in charge of infant’s care to perform the
newborn screening rather than the providers who deliver the infant.97 The standard of care
requires all health care providers to perform genetic screening and counseling for newborns.
Failure to do so amounts to a breach of duty to the child and the parents in a negligence
context.98 Health care providers must warn/inform parents of the presence of a genetic trait or
condition in their child. Hospitals with obstetric and newborn services are required to have an
American College of Medical Genetics certified or eligible genetics counselor on staff.99
For suspected cases of any of the above diseases or conditions, the State Health
Commissioner notifies the attending physician to perform confirmatory tests.100 Confirmed cases
must also be reported to the Commissioner.101 The State Board of Health is obligated to
recommend and create procedures for the treatment of these diseases or conditions.102 If families
are medically indigent, the Board shall provide the treatment. For children with phenylketonuria,
the Board must create procedures to provide parents or guardians with special food products and
reimburse the parents for the costs of these special foods.103 House Joint Resolution 164 was
enacted in 2004 to direct the Joint Commission on Health to collect information concerning the
28
infant screening program for metabolic disorders. In collecting the information, the Joint
Commission shall compile a list of the (1) types of metabolic disorders for which infants are
screened in other states, including a summary of the benefits of such screening; and (2) the costs
of such screening programs.104
Newborn screening information and data may be used for research and “collective
statistical purposes,” but only published in a non-identifiable format.105 All medical records
gathered through screening programs must be kept confidential and can be accessed only by the
Board, Commissioner, or his/her agents.106
In addition, the Commissioner maintains a reporting system for birth defects. Known as
the Virginia Congenital Anomalies Reporting and Education System,107 this system obtains data
from birth certificates and hospital medical records. The chief administrative officer of every
hospital must report to the Commissioner all congenital abnormalities in children less than two
years. Among the information required for reporting is information on the parent's service in
Vietnam, the duration of the service and possible exposure to Agent Orange through its
development, testing, or use.108 The State Board of Health is responsible for creating regulations
to implement the congenital abnormalities reporting system. The Board determines which
abnormalities should be included, what information should be reported, and follow-up activities.
Similar to the reporting of genetic conditions, data from the congenital abnormalities system are
confidential and may only be published in an anonymous format. The Commissioner may,
however, contact parents and physicians of affected children to let them know about healthcare
resources and collect additional data.109
Screening and Genetic Services for Children. Virginia statutes also mandate that the
Commissioner establish a voluntary screening program for adults and older children for sickle
29
cell anemia to help identify carriers of the trait.110 The Board may also designate voluntary
screening programs for other genetic diseases, genetic traits, and inborn errors of metabolism.111
Education and counseling for persons who have the conditions subject to screening are
required.112 Data collected from screening programs may also be used for research and statistical
analyses. The data must be kept confidential and may only be accessed by the Board,
Commissioner, or his/her agents, or the health director in charge of the screening program absent
explicit individual consent to the release of the information.113
The Virginia Administrative Code identifies genetic evaluation, testing, and counseling
as key to children’s clinical care. Program clinics should be staffed with genetics professionals
“insofar as possible.”114 Low-income patients are not charged for many genetic services
(excluding services for cystic fibrosis, hemophilia, spina bifida, and maxillofacial
deformities).115 The Division of Children’s Specialty Services works with the Division of
Maternal and Child Health’s Genetics Disease Program to provide genetic services to patients
with funding from the Maternal and Child Health Services Block Grant.116
Abortion and Wrongful Birth. Genetic information may be collected in vital statistics
reports involving abortion and miscarriage. The Virginia Board of Health maintains data for all
abortions performed.117 Among data collected include whether the pregnancy was terminated due
to a genetic defect. If a pregnancy results in fetal death due to miscarriage rather than abortion,
the presence or absence of congenital malformation is also noted.118
Physician failure to identify fetal genetic conditions may result in an action for wrongful
birth within 2 years of the time a claim arose.119 The Supreme Court of Virginia first recognized
wrongful birth as a cause of action in the 1982 case, Naccash v. Burger.120 In Naccash the court
found that negligent blood testing failed to identify a possible genetic disorder (Tay Sachs
30
disease) in the fetus, deprived the parents of informed decision, and led them to carry the baby to
term. The parents were awarded damages for emotional distress and the medical expenses of
their child. Virginia also recognizes the action for wrongful pregnancy if abortion or sterilization
attempts fail.121 For wrongful pregnancy (which may or may not involve genetic testing), the
mother may recover damages for medical expenses, pain and suffering, and lost wages that
directly result from the negligently performed abortion, the continuing pregnancy, and the
ensuing childbirth. The mother may also recover damages for emotional distress causally
resulting from her physical injury.122 The mother may not, however, recover the costs of raising
the child to the age of majority.123
E.
Genetic Information in Criminal Law
Genetic sampling of DNA, or “DNA fingerprinting,” is routinely used in criminal
proceedings to identify or absolve persons involved in crime. In Virginia, DNA from saliva or
tissue samples must be collected for anyone arrested for an actual or attempt violent felony.124
DNA is collected for every person convicted of a felony after July 1, 1990 and for every person
incarcerated for a felony after July 1, 1989.125 DNA samples are also collected from juveniles
convicted of a felony if the juvenile was older than 14 years at the time of the offense.126 DNA is
analyzed and stored by the Division of Forensic Science. The results of DNA analysis are
provided to federal, state, and local law enforcement on request as well as to the individual
identified and charged with the offense.127 The Division maintains a separate DNA database for
statistical purposes where the identities of the individual profiles are unknown. In addition, a
Local Inmate Data System (LIDS) may also contain individual DNA samples.128
The state legislature statutorily delegates authority to the Division of Forensic Science to
determine procedures for obtaining, storing, and analyzing DNA samples. The security and
31
confidentiality of the information in the DNA bank, while available for authorized criminal
investigation and prosecution, are otherwise protected through various safeguards and penalties.
The legislature specifies that the samples shall be sealed and labeled with the subject’s name,
Social Security number, date of birth, race, gender, the name of the person collecting the sample,
the date and place of collection, the arresting officer, and the offense. 129 The Division is
responsible for ensuring the confidentiality and integrity of the DNA samples.130 Any person
who disseminates information from the DNA data bank without authorization is guilty of a Class
3 misdemeanor or a Class 1 misdemeanor if the person knew the dissemination was
unauthorized.131 Finally, if a person attempts to obtain a sample from the DNA bank to perform
an unauthorized DNA analysis, the person is guilty of a Class 5 felony.132
In a criminal proceeding, DNA analysis that arises from scientifically reliable techniques
can be admitted as evidence to prove or disprove the identity of a person.133 DNA analysis is not
necessarily dispositive; the reliability of the DNA analysis and the relevance of other evidence
are questions of fact to be adjudicated in court. Finally, a person may request that their DNA
profile be expunged from the Division of Forensic Science’s DNA bank if their felony
conviction is reversed or the case dismissed.134
F.
Genetic Information in Research and Technology
The Virginia legislature has addressed human cloning and passed laws facilitating the
performance of some genetic research. Cloning is defined as “the production of a precise genetic
copy of a molecule, including deoxyribonucleic acid (DNA), or of chromosomes.”135 Human
cloning is defined as “the creation of or attempt to create a human being by transferring the
nucleus from a human cell from whatever source into an oocyte from which the nucleus has been
removed.”136 Virginia law bans human reproductive cloning, forbidding anyone from (1)
32
performing human cloning; (2) implanting or attempting to implant the product of a somatic cell
nuclear transfer into a uterine environment to initiate pregnancy; (3) possessing the product of
human cloning; or (4) shipping or receiving the product of a somatic cell nuclear transfer in
commerce for the purpose of implanting the product of somatic cell nuclear transfer into a
uterine environment to initiate pregnancy.137 However, the law allows some forms of nonreproductive cloning: biomedical or agricultural research using cloning technology, somatic cell
nuclear transfer, gene therapy, or cloning of animals.138 Violations of the human reproductive
cloning bans can result in civil penalties up to $50,000 per incident.
Virginia actively promotes other types of genetic research activities. The Virginia
Biotechnology Research Act, among other things, forbids localities from enacting regulations or
ordinances to prohibit the introduction of genetically engineered organisms into the
environment.139 In addition, Virginia provides tax exemptions for persons conducting research in
the fields of biotechnology and genetic engineering to promote knowledge and technology.140
VI.
Principal Findings and Conclusions
In many ways, Virginia genetics laws and policies are in step with other states provisions.
Yet, some noticeable differences, including some gaps in coverage, exist when compared to
other jurisdictions. This section draws conclusions summarizing various gaps and coverage of
Virginia genetics laws and policies within each of the major areas discussed in Part V, infra.
Insurance. Virginia is neither the most protective nor the least protective of genetic
discrimination via insurance among states. Most states support a prohibition on genetic
discrimination by health insurance providers; a smaller minority of states also apply prohibitions
to life, disability, or long-term care insurance providers. Virginia differs from some states
33
because it only forbids discrimination on the basis of genetic testing or information in health
insurance, and not in disability or life insurance.
Employment is another key area where most states have attempted to ban genetic
discrimination. Virginia is similar to many other states in its effort to prohibit invidious
discrimination in the workplace on the basis of genetic testing status or information. However,
unlike some states, life, disability, and long-term care insurance are excluded from the genetic
non-discrimination provisions in the employment context.
Privacy. In concert with the anti-discrimination provisions of Virginia genetics laws, the
privacy of genetic information is protected. In every context in which genetic information may
be held, from health insurance to criminal DNA banks, genetic information is protected with
affirmative assurances of confidentiality, descriptions of privacy procedures, as well as bans on
disclosure without individual informed consent. In some areas (e.g., insurance, forensics),
criminal penalties may be assigned for genetic privacy infringements. A minority of states go
beyond Virginia’s genetics privacy protections, requiring informed consent to perform or require
genetics tests or obtain or retain genetic information.
Family Law. Virginia’s genetics policies are consistent with other states regarding
paternity testing, but are less robust in areas of adoption and assisted reproductive technology.
Virginia’s policies to maintain and make accessible genetic information of biological parents to
adopted children or children of reproductive technology lag behind other states. In Virginia, for
example, adopted children may receive genetic and medical information about biological parents
only as-needed (determined by a physician). Other states assure adopted children access to the
identities and genetic information of biological parents. Perhaps in partial response, the Virginia
House of Delegates introduced a bill in 2004 to allow persons conceived by donated gametes in
34
assisted reproductive technologies to access genetic information of donor biological parents.
This bill was continued to 2005 without a vote. However, no similar bill has been introduced for
adoptees. In addition, the House seems more concerned with the marketing of sperm or eggs for
compensation and other ethical, legal, and medical implications of assisted reproductive
technologies.
Genetic Screening. Virginia features strong screening, reporting, and treatment provisions
for genetic diseases and disorders for pregnant women, newborns, and children. Screening tests,
however, for newborns are developing faster than the policies can keep apace. For example, the
list of diseases that are required for confirmation and reporting does not match the more updated
list of diseases for which newborns must be screened. House Joint Resolution 164 was passed in
2004 to direct the Joint Commission on Health to gather information on infant genetic screening
programs going on in other states.
Criminal Law. Virginia maintains a DNA bank for convicted and incarcerated felons like
other states nationwide. Virginia, however, imposes more stringent and far-reaching genetic
sampling policies than other states by requiring DNA to be collected for those arrested on
suspicion of committing a felony prior to conviction. Juveniles older than 14 years are subject to
the same DNA sampling provisions as adults under Virginia laws.
Genetic Research and Technology. Virginia is among a minority of states that has passed
laws banning human reproductive cloning. Despite this ban, Virginia encourages other types of
genetic research and engineering, including non-reproductive cloning. The Commonwealth’s
proximity to Washington, D.C., and its developing biotechnology industry sustains these sorts of
legal provisions supporting genetic technologies.
35
Appendix A. Table of Virginia Genetics Laws (as of April 6, 2004)
Area of Law
Insurance
Employment
Family - Paternity
Family – Adoption, Assisted
Reproductive Technology
Hereditary and Congenital
Disorders – Newborn Screening
and Treatment
Hereditary and Congenital
Disorders –Screening and Genetic
Services for Children
Abortion and Wrongful Birth
Statutes*
Admin. Regulation
§ 38.2-508.4 (1996)
§ 38.2-508.4 (1996)
§ 38.2-613 (2001)
§ 40.1-28.7:1 (2002)
§ 20-49.1 (1998)
§ 20-49.3 (1997)
§ 20-49.10 (2001)
§ 63.2-1913 (2002)
§ 32.1-286 (1999)
§ 63.2-1960 (2002)
§ 64.1-5.2 (1999)
§ 63.2-1247 (2002)
§ 32.1-65 (2002)
§ 32.1-66 (1988)
§ 32.1-67 (2000)
§ 32.1-67.1 (1988)
§ 32.1-69.1 (1994)
§ 32.1-69.2 (1979)
§ 32.1-68 (1979)
§ 32.1-69 (1979)
Pending Bills
Cases**
2004 H.D. 1216
2004 S. 650
12 VAC 5-70-10 (1993)
12 VAC 5-70-30 (1993)
12 VAC 5-70-40 (1993)
12 VAC 5-410-440 (1995)
2004 H.D. 305
2004 H.D.J. Res. 84
2004 H.D.J. Res. 164
(enacted)
2004 H.D.J. Res. 20
2004 VA H.B. 1133
(enacted)
12 VAC 5-190-440 (1990)
12 VAC 5-190-140 (1990)
12 VAC 5-70-50 (1993)
12 VAC 5-550-120 (2003)
§ 19.2-310.2:1 (2004)
6 VAC 20, Agcy. Sum.
§ 19.2-310.2 (2003)
§ 19.2-310.3 (2003)
§ 19.2-310.3:1 (2004)
§ 19.2-310.4 (2003)
§ 19.2-310.5 (2003)
§ 19.2-310.6 (1990)
§ 19.2-310.7 (2003)
§ 16.1-299.1 (2003)
§ 19.2-270.5 (2002)
§ 32.1-162.21-2 (2001) 23 VAC 10-210-765 (1986)
Research and Technology
§ 2.2-5509 (2001)
* Year listed for statutes and regulations is date of most recent amendment.
** Cases listed are representative but not necessarily exhaustive.
Criminal Proceedings
36
2004 VA H.B. 776
Jones v. Robinson, 329 S.E.2d 794 (1985)
Dunbar v. Hogan, 432 S.E.2d 16 (1993)
Garrett v. Majied, 471 S.E.2d 479 (1996)
Department of Social Servs., v. Flaneary, 469
S.E.2d 79 (1996)
Didato v. Strehler, 554 S.E.2d 42 (2001)
Glascock v. Laserna, 439 S.E.2d 380 (1994)
Naccash v. Burger, 290 S.E.2d 825 (1982)
N/A
Appendix B. Text of Virginia Genetics Statutes and Administrative
Regulations
I. The Use of Genetic Tests and Information in Insurance
Definitions Va. Code Ann. §§ 38.2-508.4 (1996)
A. As used in this section
"Genetic characteristic" means any scientifically or medically identifiable gene or chromosome, or alteration
thereof, which is known to be a cause of a disease or disorder, or determined to be associated with a statistically
increased risk of development of a disease or disorder, and which is asymptomatic of any disease or disorder.
"Genetic information" means information about genes, gene products, or inherited characteristics that may
derive from an individual or a family member.
"Genetic test" means a test for determining the presence or absence of genetic characteristics in an individual in
order to diagnose a genetic characteristic.
Insurance Va. Code Ann. §§ 38.2-508.4 (1996)
B.
No person proposing to issue, re-issue, or renew any policy, contract, or plan of accident and sickness
insurance defined in § 38.2-109, but excluding disability income insurance, issued by any (i) insurer providing
hospital, medical and surgical or major medical coverage on an expense incurred basis, (ii) corporation providing
a health services plan, or (iii) health maintenance organization providing a health care plan for health care services
shall, on the basis of any genetic information obtained concerning an individual or on the individual's request for
genetic services, with respect to such policy, contract, or plan:
1. Terminate, restrict, limit, or otherwise apply conditions to coverage of an individual or restrict the sale to an
individual;
2. Cancel or refuse to renew the coverage of an individual;
3. Exclude an individual from coverage;
4. Impose a waiting period prior to commencement of coverage of an individual;
5. Require inclusion of a rider that excludes coverage for certain benefits and services; or
6. Establish differentials in premium rates for coverage.
In addition, no discrimination shall be made in the fees or commissions of an agent or agency for an enrollment, a
subscription, or the renewal of an enrollment or subscription of any person on the basis of a person's genetic
characteristics which may, under some circumstances, be associated with disability in that person or that person's
offspring.
C. Notwithstanding any other provisions of law, all information obtained from genetic screening or testing
conducted prior to the repeal of this section shall be confidential and shall not be made public nor used in any
way, in whole or in part, to cancel, refuse to issue or renew, or limit benefits under any policy, contract or plan
subject to the provisions of this section.
VA. Code Ann. § 38.2-109. Accident and sickness (insurance defined)
A. "Accident and sickness insurance" means insurance against loss resulting from sickness, or from bodily injury
or death by accident or accidental means, or from a combination of any or all of these perils. As used in this title,
unless the context requires otherwise, the term "accident and sickness insurance" shall be deemed to include "credit
accident and sickness insurance."
B. The term "accident and sickness insurance" shall also include agreements insuring against losses resulting from
health care claims or expenses of health care in excess of a specific or aggregate dollar amount, when such
agreements are used to provide coverage to (i) an employee welfare benefit plan or any other plan providing
accident and sickness benefits, (ii) a health maintenance organization, or (iii) a provider associated with a managed
37
care network, provided:
1. The agreement clearly discloses the extent and duration of the liability assumed by the insurer once the
policyholder's liability has been exceeded; and
2. The insurer maintains reserves in accordance with § 38.2-1314 for the liability it assumes under the agreement.
DIFFERENCE BETWEEN LIFE AND ACCIDENT INSURANCE. --It is apparent that life insurance means
insurance against death regardless of cause. It is equally apparent that accident and sickness insurance means
insurance against death caused only by accident or, where the policy so provides, by accident or sickness, or both.
Gudnason v. Life Ins. Co. of N. Am., 231 Va. 197, 343 S.E.2d 54 (1986).
Insurance Disclosure Limitations and Conditions Va. Code Ann. § 38.2-613 (2001)
D. 1. No person proposing to issue, re-issue, or renew any policy, contract, or plan of accident and sickness
insurance defined in § 38.2-109, but excluding disability income insurance, issued by any (i) insurer providing
hospital, medical and surgical or major medical coverage on an expense incurred basis, (ii) corporation providing a
health services plan, or (iii) health maintenance organization providing a health care plan for health care services
shall disclose any genetic information about an individual or a member of such individual's family collected or
received in connection with any insurance transaction unless the disclosure is made with the written authorization of
the individual.
2. For the purpose of this subsection, "genetic information" means information about genes, gene products, or
inherited characteristics that may derive from an individual or a family member.
3. Agents and insurance support organizations shall be subject to the provisions of this subsection to the extent of
their participation in the issue, re-issue, or renewal of any policy, contract, or plan of accident and sickness
insurance defined in § 38.2-109, but excluding disability income insurance.
II. The Use of Genetic Tests and Information in Employment
Employment Va. Code Ann. § 40.1-28.7:1 (2002)
A. No employer shall:
1. Request, require, solicit or administer a genetic test, as defined in § 38.2-508.4, to any person as a
condition of employment; or
2. Refuse to hire, fail to promote, discharge or otherwise adversely affect any terms or conditions of
employment of any employee or prospective employee solely on the basis of a genetic characteristic, as
defined in § 38.2-508.4, or the results of a genetic test, regardless of how the employer obtained such
information or results. Nothing in this section shall preclude the use of information related to a criminal
investigation.
B. The employee may bring an action in a court of competent jurisdiction over the employer who took adverse
action against the employee in violation of this section. Any such action shall be brought within 180 days
from the date of the adverse action. The court may, in its discretion, award actual or punitive damages,
including back pay with interest at the judgment rate as provided in § 6.1-330.54, or injunctive relief.
C. Nothing in this section shall be construed to require the Department of Labor and Industry to conduct any
investigations or enforcement actions.
D. As used in subdivision A 2 of this section, "terms and conditions of employment" shall not include any
long term care, life or disability insurance policy.
III. The Use of Genetic Tests and Information in Family Law
Paternity Va. Code Ann. § 20-49.1 (1998)
E. The parent and child relationship between a child and a man may be established by:
1. Scientifically reliable genetic tests, including blood tests, which affirm at least a ninety-eight percent
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probability of paternity. Such genetic test results shall have the same legal effect as a judgment entered
pursuant to § 20-49.8.
Admission of genetic tests Va. Code Ann. § 20-49.3 (1997)
A. In the trial of any matter in any court in which the question of parentage arises, the court, upon its own motion
or upon motion of either party, may and, in cases in which child support is in issue, shall direct and order that the
alleged parents and the child submit to scientifically reliable genetic tests including blood tests. The motion of a
party shall be accompanied by a sworn statement either (i) alleging paternity and setting forth facts establishing a
reasonable possibility of the requisite sexual contact between the parties or (ii) denying paternity.
B. The court shall require the person requesting such genetic test, including a blood test, to pay the cost. However, if
such person is indigent, the Commonwealth shall pay for the test. The court may, in its discretion, assess the costs of
the test to the party or parties determined to be the parent or parents.
C. The results of a scientifically reliable genetic test, including a blood test, may be admitted in evidence when
contained in a written report prepared and sworn to by a duly qualified expert, provided the written results are filed
with the clerk of the court hearing the case at least fifteen days prior to the hearing or trial. Verified documentary
evidence of the chain of custody of the blood specimens is competent evidence to establish the chain of custody.
Any qualified expert performing such test outside the Commonwealth shall consent to service of process through the
Secretary of the Commonwealth by filing with the clerk of the court the written results. Upon motion of any party in
interest, the court may require the person making the analysis to appear as a witness and be subject to crossexamination, provided that the motion is made at least seven days prior to the hearing or trial. The court may require
the person making the motion to pay into court the anticipated costs and fees of the witness or adequate security for
such costs and fees.
Relief from legal determination of paternity Va. Code Ann. § 20-49.10 (2001)
An individual may file a petition for relief and, except as provided herein, the court may set aside a final judgment,
court order, administrative order, obligation to pay child support or any legal determination of paternity if a
scientifically reliable genetic test performed in accordance with this chapter establishes the exclusion of the
individual named as a father in the legal determination. The court shall appoint a guardian ad litem to represent the
interest of the child. The petitioner shall pay the costs of such test. A court that sets aside a determination of
paternity in accordance with this section shall order completion of a new birth record and may order any other
appropriate relief, including setting aside an obligation to pay child support. No support order may be retroactively
modified, but may be modified with respect to any period during which there is a pending petition for relief from a
determination of paternity, but only from the date that notice of the petition was served on the nonfiling party.
A court shall not grant relief from determination of paternity if the individual named as father (i) acknowledged
paternity knowing he was not the father, (ii) adopted the child, or (iii) knew that the child was conceived through
artificial insemination.
Administrative establishment of paternity Va. Code Ann. § 63.2-1913 (2002)
The Department may establish the parent and child relationship between a child and a man upon request, verified
by oath or affirmation, filed by a child, a parent, a person claiming parentage, a person standing in loco parentis to
the child or having legal custody of the child, or a representative of the Department or the Department of Juvenile
Justice. The request may be filed at any time before the child attains the age of eighteen years.
Pursuant to subsection F of § 63.2-1903, the Department may summons a parent or putative parent to appear in the
office of the Division of Child Support Enforcement to provide such information as may be necessary to the
proceeding.
Paternity may be established by a written statement of the father and mother made under oath acknowledging
paternity or scientifically reliable genetic tests, including blood tests, which affirm at least a ninety-eight percent
probability of paternity. The Department may order genetic testing and shall pay the costs of such tests, subject to
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recoupment from the father, if paternity is established. Where an original test is contested and additional testing is
requested, the Department may require advance payment by the contestant.
A genetic test result affirming at least a ninety-eight percent probability of paternity shall have the same legal effect
as a judgment entered pursuant to § 20-49.8. When sixty days have elapsed from its signing, a voluntary statement
acknowledging paternity shall have the same legal effect as a judgment entered pursuant to § 20-49.8 and shall be
binding and conclusive unless, in a subsequent judicial proceeding, the person challenging the statement establishes
that the statement resulted from fraud, duress or a material mistake of fact. In any subsequent proceeding in which a
statement acknowledging paternity is subject to challenge, the legal responsibilities of any person signing it shall not
be suspended during the pendency of the proceeding, except for good cause shown.
Exhumation for Proof of Parentage Va. Code Ann. § 32.1-286 (1999)
F. Upon the petition of a party attempting to prove, in accordance with the provisions of §§ 64.1-5.1 and 64.15.2, that he is the issue of a person dead and buried, a court may order the exhumation of the body of a dead
person for the conduct of scientifically reliable genetic tests, including DNA tests, to prove a biological
relationship. The costs of exhumation, testing, and reinterment shall be paid by the petitioner unless, for
good cause shown, the court orders such costs paid from the estate of the exhumed deceased. This
provision is intended to provide a procedural mechanism for obtaining posthumous samples for reliable
genetic testing and shall not require substantive proof of parentage to obtain the exhumation order.
Recovery of certain fees and costs Va. Code Ann. § 63.2-1960 (2002)
The Department shall have the authority to assess and recover from the noncustodial parent in proceedings to
enforce child support obligations against the noncustodial parent, reasonable attorney's fees. The Department shall
also have the authority to assess and recover costs in such cases. However, the Department shall not be entitled to
recover attorney's fees or costs in any case in which the noncustodial parent prevails.
The Department shall have the authority to assess and recover the actual costs of genetic testing against the
noncustodial parent if paternity is established. Where an original test is contested and additional testing is
requested, the Department may require advance payment by the contestant. The genetic testing costs shall be set at
the rate charged the Department by the provider of genetic testing services.
Evidence of paternity Va. Code Ann. § 64.1-5.2 (1999)
For the purposes of this title, evidence that a man is the father of a child born out of wedlock shall be clear and
convincing and may include, but shall not be limited to, the following:
1. That he cohabited openly with the mother during all of the ten months immediately prior to the time the child
was born;
2. That he gave consent to a physician or other person, not including the mother, charged with the responsibility of
securing information for the preparation of a birth record that his name be used as the father of the child upon the
birth records of the child;
3. That he allowed by a general course of conduct the common use of his surname by the child;
4. That he claimed the child as his child on any statement, tax return or other document filed and signed by him
with any local, state or federal government or any agency thereof;
5. That he admitted before any court having jurisdiction to try and dispose of the same that he is the father of the
child;
6. That he voluntarily admitted paternity in writing, under oath;
7. The results of scientifically reliable genetic tests, including DNA tests, weighted with all the evidence; or
8. Other medical, scientific or anthropological evidence relating to the alleged parentage of the child based on tests
performed by experts.
If a proceeding to determine parentage has been initiated and concluded pursuant to former § 20-61.1 or Chapter
3.1 (§ 20-49.1 et seq.) of Title 20, and the court enters a judgment against a man for the support, maintenance and
education of a child as if the child were born in lawful wedlock to the man, that judgment shall be sufficient
evidence of paternity for the purposes of this section.
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Adoption Va. Code Ann. § 63.2-1247 (2002)
C. In any case where a physician or licensed mental health provider submits a written statement, in response
to a request from the adult adoptee, adoptive parent, birth parent or adult birth siblings, indicating that it is
critical that medical, psychological or genetic information be conveyed, and states clearly the reasons why
this is necessary, the agency that made the investigation shall make an attempt to inform the adult adoptee,
adoptive parents, birth parents or adult birth siblings, whichever is applicable, of the information. The
Commissioner shall provide information from the adoption record to the searching agency if necessary to
facilitate the search. Confidentiality of all parties shall be maintained by the agency.
IV. The use of genetic information in response to hereditary and congenital disorders
Infants to be subjected to tests Va. Code Ann. § 32.1-65 (2002)
<Text of section effective one year after appropriation or funds being otherwise secured>
In order to prevent mental retardation, permanent disability or death, every infant who is born in this
Commonwealth shall be subjected to a screening test for biotinidase deficiency, phenylketonuria, hypothyroidism,
homocystinuria, galactosemia, congenital adrenal hyperplasia, medium-chain acyl-CoA dehydrogenase (MCAD or
MCADH) deficiency, and Maple Syrup Urine Disease, and each infant determined at risk shall be subject to a
screening test for sickle cell diseases. Any infant whose parent or guardian objects thereto on the grounds that such
test conflicts with his religious practices or tenets shall not be required to receive a screening test. The physician,
nurse or midwife in charge of the delivery of a baby or, if none, the first attending physician shall cause such test to
be performed. The screening tests shall be performed by the Division of Consolidated Laboratory Services or any
other laboratory the Department of Health has contracted with to provide this service.
The program for screening infants for sickle cell diseases shall be conducted in addition to the programs provided
for in Article 8 (§ 32.1-68 et seq.) of this chapter.
Commissioner to notify physicians; reports to Commissioner Va. Code Ann. § 32.1-66 (1988).
Whenever a test result indicates suspicion of biotinidase deficiency, phenylketonuria, hypothyroidism,
homocystinuria, galactosemia, Maple Syrup Urine Disease or any sickle cell disease, the Commissioner shall notify
forthwith the attending physician and shall perform or provide for any additional testing required to confirm or
disprove the diagnosis of biotinidase deficiency, phenylketonuria, hypothyroidism, homocystinuria, galactosemia,
Maple Syrup Urine Disease or the sickle cell disease. All physicians, public health nurses and administrators of
hospitals in this Commonwealth shall report the discovery of all cases of biotinidase deficiency, phenylketonuria,
hypothyroidism, homocystinuria, galactosemia, Maple Syrup Urine Disease to the Commissioner, as well as sickle
cell diseases in infants less than one year of age.
Duty of Board with respect to treatment Va. Code Ann. § 32.1-67 (2000).
The Board shall recommend procedures for the treatment of biotinidase deficiency, phenylketonuria,
hypothyroidism, homocystinuria, galactosemia, Maple Syrup Urine Disease and sickle cell diseases, and shall
provide such treatment for infants in medically indigent families. The Board shall create procedures to provide to (i)
the parents or guardian of any child or (ii) any pregnant woman, who is a legal resident of the Commonwealth and
who is diagnosed as requiring treatment for phenylketonuria, the special food products required in the management
of phenylketonuria out of such funds as may be appropriated for this purpose. The special food products shall
include medical formulas which are designed specifically for the treatment of phenylketonuria and low protein
modified foods (not foods naturally low in protein) which are designed specifically for use in the treatment for
inborn errors of metabolism. The parents or guardian of any such child, or the pregnant woman, shall, in the
discretion of the Department, reimburse to the local health department the cost of such special medical formulas in
an amount not to exceed two percent of their gross income. The parents or guardian of any such child, or the
pregnant woman, shall, with such funds as are appropriated, receive reimbursement from the Department for the
cost of such special low protein modified foods in an amount not to exceed $2,000 per diagnosed person per year.
The reimbursement required by this section shall be payable quarterly by the first day of January, April, July, and
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October.
Confidentiality of records; prohibition of discrimination Va. Code Ann. § 32.1-67.1 (1988)
The results of the screening programs conducted pursuant to this article may be used for research and collective
statistical purposes. No publication of information, biomedical research or medical data shall be made which
identifies any infant having a genetic disease. All medical records maintained as part of the screening programs shall
be confidential and shall be accessible only to the Board, the Commissioner or his agents.
Commissioner to establish screening program; review by Board; program to include education and postscreening counseling; laboratory tests Va. Code Ann. § 32.1-68 (1979)
A. The Commissioner, in cooperation with local health directors, shall establish a voluntary program for the
screening of individuals for the disease of sickle cell anemia or the sickle cell trait and for such other
genetically related diseases and genetic traits and inborn errors of metabolism as the Board may deem
necessary
B. The Board shall review the program from time to time to determine the appropriate age and the method of
screening for such conditions or traits in the light of technological changes.
C. The screening program shall include provisions for education concerning the nature and treatment of sickle
cell anemia, other genetically related diseases and inborn errors of metabolism and a post-screening
counseling program for the treatment of any person determined to have such a condition.
D. The program may include the provision of laboratory testing.
Records confidential; disclosure of results of screening Va. Code Ann. § 32.1-69 (1979)
The results of any particular screening program shall be sent to the physician of the person tested, if known, and
either to the parents when the person screened is under the age of eighteen or to the person if he is eighteen years of
age or over. The results of a screening program may be used for research and collective statistical purposes. Except
as hereinabove provided, all records maintained as part of any screening program shall be strictly confidential and
shall be accessible only to the Board, the Commissioner or his agents or to the local health director who is
conducting the screening program except by explicit permission of the person who has been screened if such person
is eighteen years of age or over or of such person's parent or guardian if he is under age eighteen.
Virginia Congenital Anomalies Reporting and Education System Va. Code Ann. § 32.1-69.1 (1994)
A. In order to collect data to evaluate the possible causes of birth defects, improve the diagnosis and treatment
of birth defects and establish a mechanism for informing the parents of children identified as having birth
defects and their physicians about the health resources available to aid such children, the Commissioner
shall establish and maintain a Virginia Congenital Anomalies Reporting and Education System using data
from birth certificates filed with the State Registrar of Vital Records and data obtained from hospital
medical records. The chief administrative officer of every hospital, as defined in § 32.1-123, shall make or
cause to be made a report to the Commissioner of any person under two years of age diagnosed as having a
congenital anomaly. This report shall include information on the parent's service in Vietnam, the duration
of the service and possible exposure to Agent Orange through its development, testing or use. The
Commissioner may appoint an advisory committee to assist in the design and implementation of this
reporting and education system with representation from relevant groups including, but not limited to,
physicians, geneticists, personnel of appropriate state agencies, persons with disabilities and the parents of
children with disabilities.
B. B. With the assistance of the advisory committee, the Board shall promulgate such regulations as may be
necessary to implement this reporting and education system. These regulations may include determinations
of specific genetic disorders to be monitored, the scope of the information to be collected, appropriate
mechanisms for follow-up, relationships between the reporting and education system and other agencies
and mechanisms for review and evaluation of the activities of the system. The reporting and education
system may collect the name, address, sex, race, and any other information, determined to be pertinent by
the Board, regarding persons reported to have birth defects.
Confidentiality of records; publication; authority of Commissioner to contact parents and physicians Va.
Code Ann. § 32.1-69.2 (1979).
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The Commissioner and all other persons to whom data is submitted pursuant to § 32.1-69.1 shall keep such
information confidential. No publication of information shall be made except in the form of statistical or other
studies which do not identify individuals. However, the Commissioner may contact the parents of children identified
as having birth defects and their physicians to collect relevant data and to provide them with information about
available public and private health care resources.
Genetic services 12 VAC 5-190-440 (1990)
Genetic evaluation, genetic testing, and genetic counseling are an integral part of the care of children managed in
program clinics. Insofar as possible, a genetic professional is incorporated in the program clinics. Low income
patients shall receive genetic services at no charge to the families whether they are provided at a program clinic or a
genetic clinic. Other than low income patients with cystic fibrosis, hemophilia, spina bifida and maxillofacial
deformities shall also receive genetic services at no charge to the families.
Statutory Authority: §§ 32.1-12 and 32.1-77 of the Code of Virginia.
Relationships of the Division of Children's Specialty Services.
12 VAC 5-190-140 (1990)
E. Other state agencies and programs.
4. Maternal and Child Health. Genetics Disease Program. The division has a formal agreement with the
Division of Maternal and Child Health's Genetics Disease Program providing for cross referral between the
program and genetics centers. Genetic counseling, testing and diagnostic services shall be provided by the
genetics centers to program patients as part of their funding through the Maternal and Child Health
Services Block Grant. See 12 VAC 5-190-440.
Statutory Authority: §§ 32.1-12 and 32.1-77 of the Code of Virginia.
(Newborn) Testing. 12 VAC 5-70-30 (1993)
A. General. All newborn infants born in the Commonwealth shall be provided newborn screening tests as specified
by § 32.1-65 of the Code of Virginia, except that such tests shall not be given to any infant whose parents or
guardian objects in writing thereto on the grounds that the testing conflicts with his religious practice or tenets. The
written objection shall be incorporated into the medical record.
B. Specific policies and procedures. Newborn screening tests shall be performed by the Department of General
Services, Division of Consolidated Laboratory Services, or such other contractor as the board may select pursuant to
the requirements of the Public Procurement Act (§ 11-35 et seq. of the Code of Virginia). The specific protocols and
procedures for newborn screening testing shall be established by agreement between the Department of Health,
Office of Family Health Services and the contractor.
C. Applicable time intervals for testing infants.
1. Full-term infants. A specimen shall be taken from each full-term infant for the newborn screening testing and the
specimen shall be submitted to the contractor at the time of discharge from the hospital or not later than three days
of age. If the delivery is unattended, then the first attending health care provider shall cause the initial newborn
screening tests to be performed at the time of the first contact. In those instances where the infant is tested prior to
24 hours of age, the health care provider shall instruct the mother or guardian that the infant shall be retested for the
diseases specified in § 32.1-65 of the Code of Virginia before 14 days of life.
2. Preterm infants. Each preterm infant shall have the screening test performed at seven days of age, or at the time of
discharge from the hospital, whichever is the earlier.
3. Infants requiring transfusions. In those instances where the infant requires a transfusion with any blood product,
the blood specimen for the newborn screening tests shall be obtained prior to the transfusion. Another specimen
shall be taken from the infant immediately upon development of clinical symptoms consistent with a disease
specified in § 32.1-65 of the Code of Virginia or at the time of discharge from the hospital, but not later than 14 days
of age.
D. Testing procedures and disposition of blood specimens. The blood specimen for the screening test shall be
collected and identifying information provided in accordance with the instructions on the forms provided, and shall
be sent within 24 hours from the time of collection to the contractor for testing. The contractor's name and address
shall be stated on the form.
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The specialized supplies required for submitting the specimens shall be provided to the health care provider by the
contractor upon request from the provider.
STATUTORY AUTHORITY
§ 32.1-12 and Article 7 (§ 32.1-65 et seq.) of Chapter 2 of Title 32.1 of the Code of Virginia.
Reports and notifications. 12 VAC 5-70-40 (1993)
The laboratory reports will be sent to the hospital or health care provider that submitted the specimen and any other
health care provider identified on the laboratory form accompanying the specimen. The Director of the Office of
Family Health Services shall be responsible for making the notifications required to discharge the department's
responsibility under these regulations. The protocols and procedures for reporting and notification shall be
established by agreement between the Department of Health, Office of Family Health Services and the contractor.
Services and treatment provided. 12 VAC 5-70-50 (1993).
The department shall provide the services of appropriate professionals to conduct clinics for the management of all
patients with a disease specified in § 32.1-65 of the Code of Virginia. The department shall notify the health care
providers identified in 12 VAC 5-70-40 of the availability of diagnostic evaluation and treatment services for the
diseases specified in § 32.1-65 of the Code of Virginia. Services will be provided to medically indigent families at
no direct cost to the family.
STATUTORY AUTHORITY
§ 32.1-12 and Article 7 (§ 32.1-65 et seq.) of Chapter 2 of Title 32.1 of the Code of Virginia.
Obstetric and newborn services. 12 VAC 5-410-440 (1995)
b. The policies and procedures for the general level nursery and all higher levels of newborn services shall include,
but not be limited to:
(20)Screening and treatment of genetic, metabolic, and other diseases identifiable in the newborn period as
specified in § 32.1-65 of the Code of Virginia and in accordance with the Regulations Governing the Newborn
Screening and Treatment Program (12 VAC 5-70-10 et seq.).
d. The subspecialty level support services and resources that are required in addition to the requirements of the
lower level nurseries are as follows:
(9)An American College of Medical Genetics certified or eligible genetics counselor on staff;
Statutory Authority: §§ 32.1-12 and 32.1-127 of the Code of Virginia.
Fetal death or induced termination of pregnancy report items. 12 VAC 5-550-120 (2003)
B. The Report of Induced Termination of Pregnancy, Commonwealth of Virginia, and shall contain the following
items for induced terminations of pregnancy: place of occurrence; usual residence of patient; patient identification
number; age of patient; hispanic origin, if any, and race of patient; education of patient; patient married to father;
date of pregnancy termination; pregnancy history of patient; date of last normal menses and physician's estimate of
gestation; type of termination procedures; pregnancy terminated because of genetic defect; signature, title, and
address of person completing this report; registration area and report numbers.
Statutory Authority: §§ 32.1-12 and 32.1-250 of the Code of Virginia.
V. The Use of Genetic Information in Criminal Proceedings
Amended March 15, 2004 (HB 776)
Be it enacted by the General Assembly of Virginia:
1. That Section 19.2-310.2:1 of the Code of Virginia is amended and reenacted as follows: Saliva or tissue sample
required for DNA analysis after arrest for a violent felony Va. Code Ann. § 19.2-310.2:1 (2004).
Every person arrested for the commission or attempted commission of a violent felony as defined in Section 19.2-
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297.1 or a violation or attempt to commit a violation of Sections 18.2-89, 18.2-90, 18 .2-91, or Section 18.2-92, shall
have a sample of his saliva or tissue taken for DNA (deoxyribonucleic acid) analysis to determine identification
characteristics specific to the person. After a determination by a magistrate or a grand jury that probable cause exists
for the arrest, a sample shall be taken prior to the person's release from custody. The analysis shall be performed by
the Division of Forensic Science or other entity designated by the Division. The identification characteristics of the
profile resulting from the DNA analysis shall be stored and maintained by the Division in a DNA data bank and
shall be made available as provided in Section 19.2-310.5.
The clerk of the court shall notify the Division of final disposition of the criminal proceedings. If the charge for
which the sample was taken is dismissed or the defendant is acquitted at trial, the Division shall destroy the sample
and all records thereof, provided there is no other pending qualifying warrant or capias for an arrest or felony
conviction that would otherwise require that the sample remain in the data bank.
Blood, saliva or tissue sample required for DNA analysis upon conviction of a felony; fee Va. Code Ann. §
19.2-310.2 (2003)
Every person convicted of a felony on or after July 1, 1990, and every person convicted of a felony offense under
Article 7 (§ 18.2-61 et seq.) of Chapter 4 of Title 18.2 who was incarcerated on July 1, 1989, shall have a sample of
his blood, saliva or tissue taken for DNA (deoxyribonucleic acid) analysis to determine identification characteristics
specific to the person. If a sample has been previously taken from the person as indicated by the Local Inmate Data
System (LIDS), no additional sample shall be taken. A fee of twenty-five dollars shall be charged for the withdrawal
of this sample. …
The analysis shall be performed by the Division of Forensic Science, Department of Criminal Justice Services or
other entity designated by the Division. The identification characteristics of the profile resulting from the DNA
analysis shall be stored and maintained by the Division in a DNA data bank and shall be made available only as
provided in § 19.2-310.5.
After July 1, 1990, the blood, saliva or tissue sample shall be taken prior to release from custody.
Notwithstanding the provisions of § 53.1-159, any person convicted of a felony who is in custody after July 1, 1990,
shall provide a blood, saliva or tissue sample prior to his release. Every person so convicted after July 1, 1990, who
is not sentenced to a term of confinement shall provide a blood, saliva or tissue sample as a condition of such
sentence.
Procedures for withdrawal of blood, saliva or tissue sample for DNA analysis Va. Code Ann. § 19.2-310.3
(2003)
Each sample required pursuant to § 19.2-310.2 from persons who are to be incarcerated shall be withdrawn at the
receiving unit or at such other place as is designated by the Department of Corrections or, in the case of a juvenile,
the Department of Juvenile Justice. The required samples from persons who are not sentenced to a term of
confinement shall be withdrawn at a time and place specified by the sentencing court. Only a correctional health
nurse technician or a physician, registered professional nurse, licensed practical nurse, graduate laboratory
technician, or phlebotomist shall withdraw any blood sample to be submitted for analysis. No civil liability shall
attach to any person authorized to withdraw blood, saliva or tissue as provided herein as a result of the act of
withdrawing blood, saliva or tissue from any person submitting thereto, provided the blood, saliva or tissue was
withdrawn according to recognized medical procedures. However, no person shall be relieved from liability for
negligence in the withdrawing of any blood, saliva or tissue sample.
Chemically clean sterile disposable needles and vacuum draw tubes or swabs shall be used for all samples. The tube
or envelope containing the sample shall be sealed and labeled with the subject's name, social security number, date
of birth, race and gender; the name of the person collecting the sample; and the date and place of collection. The
tubes or envelopes containing the samples shall be secured to prevent tampering with the contents. The steps herein
set forth relating to the taking, handling, identification, and disposition of blood, saliva or tissue samples are
procedural and not substantive. Substantial compliance therewith shall be deemed to be sufficient. The samples shall
be transported to the Division of Forensic Science not more than 15 days following withdrawal and shall be
analyzed and stored in the DNA data bank in accordance with §§ 19.2-310.4 and 19.2- 310.5.
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Procedures for taking saliva or tissue sample for DNA analysis Va. Code Ann. § 19.2-310.3:1 (2003)
A. Each sample required pursuant to § 19.2-310.2:1 from persons arrested shall be taken before release from custody
at such place as is designated by the law-enforcement agency responsible for arrest booking in the jurisdiction.
Samples shall be taken in accordance with procedures adopted by the Division of Forensic Science. The sample
shall be sealed and labeled with the subject's name, social security number, date of birth, race and gender; the name
of the person collecting the sample; the date and place of collection; information identifying the arresting or
accompanying officer; and the offense for which the person was arrested. The sample shall be secured to prevent
tampering with the contents and be accompanied by a copy of the arrest warrant or capias. The steps herein set forth
relating to the taking, handling, identification, and disposition of saliva or tissue samples are procedural and not
substantive. The sample shall be transported to the Division of Forensic Science not more than 15 days following
withdrawal and shall be analyzed and stored in the DNA data bank in accordance with §§ 19.2-310.4 and 19.2310.5.
B. Substantial compliance therewith shall be deemed to be sufficient. If a sample has been previously taken from the
individual as indicated by the Local Inmate Data System (LIDS), no additional sample shall be taken. No civil
liability shall attach to any person authorized to take saliva or tissue as provided herein as a result of the act of
taking saliva or tissue from any person submitting thereto, provided the saliva or tissue was taken according to
recognized medical procedures. However, no person shall be relieved from liability for negligence in the taking of
any saliva or tissue sample.
Addition to § 19.2-310.3:1 H.B. No. 235 Enacted March 12, 2004
1. § 1. The State Compensation Board shall (i) maintain in the Local Inmate Data System (LIDS) specific data fields
for an inmate's country of birth and country of citizenship, (ii) require all jail facilities that are subject to LIDS
reporting to complete the additional fields for all inmates housed at such facilities, (iii) annually encourage all jail
facilities subject to LIDS reporting to request compensation from the United States Department of Justice State
Criminal Alien Assistance Program (SCAAP) for costs associated with incarcerating undocumented aliens; (iv)
provide information to all jail facilities on the eligibility requirements to obtain such funds; and (v) monitor local jail
participation in the SCAAP program.
Procedures for conducting DNA analysis of blood, saliva or tissue sample Va. Code Ann. § 19.2-310.4 (2003).
Whether or not the results of an analysis are to be included in the data bank, the Division shall conduct the DNA
analysis in accordance with procedures adopted by the Division to determine identification characteristics specific to
the individual whose sample is being analyzed. The Director or his designated representative shall complete and
maintain on file a form indicating the name of the person whose sample is to be analyzed, the date and by whom the
blood, saliva or tissue sample was received and examined, and a statement that the seal on the tube or envelope
containing the sample had not been broken or otherwise tampered with. The remainder of a blood, saliva or tissue
sample submitted for analysis and inclusion in the data bank pursuant to § 19.2- 310.2 or § 19.2-310.2:1 may be
divided, labeled as provided for the original sample, and securely stored by the Division in accordance with specific
procedures adopted by regulation of the Division to ensure the integrity and confidentiality of the samples. All or
part of the remainder of that sample may be used only (i) to create a statistical data base provided no identifying
information on the individual whose sample is being analyzed is included or (ii) for retesting by the Division to
validate or update the original analysis.
A report of the results of a DNA analysis conducted by the Division as authorized, including the profile and
identifying information, shall be made and maintained at the Division. A certificate and the results of the analysis
shall be admissible in any court as evidence of the facts therein stated. Except as specifically provided in this section
and § 19.2-310.5, the results of the analysis shall be securely stored and shall remain confidential.
DNA data bank and exchange Va. Code Ann. § 19.2-310.5 (2003)
It shall be the duty of the Division to receive blood, saliva or tissue samples and to analyze, classify, and file the
results of DNA identification characteristics profiles of blood, saliva or tissue samples submitted pursuant to § 19.2310.2 or § 19.2-310.2:1 and to make such information available as provided in this section. The results of an
analysis and comparison of the identification characteristics from two or more blood, saliva or tissue samples shall
46
be made available directly to federal, state and local law-enforcement officers upon request made in furtherance of
an official investigation of any criminal offense. The Division shall confirm whether or not there is a DNA profile
on file for a specific individual if a federal, state or local law- enforcement officer requests that information in
furtherance of an official investigation of any criminal offense. A request may be made by personal contact, mail, or
electronic means. The name of the requestor and the purpose for which the information is requested shall be
maintained on file with the Division.
Upon his request, a copy of the request for search shall be furnished to any person identified and charged with an
offense as the result of a search of information in the data bank.
The Division shall adopt regulations governing (i) the methods of obtaining information from the data bank in
accordance with this section and (ii) procedures for verification of the identity and authority of the requestor. The
Division shall specify the positions in that agency which require regular access to the data bank and samples
submitted as a necessary function of the job.
The Division shall create a separate statistical data base comprised of DNA profiles of blood, saliva or tissue
samples of persons whose identity is unknown. Nothing in this section or § 19.2-310.6 shall prohibit the Division
from sharing or otherwise disseminating the information in the statistical data base with law-enforcement or criminal
justice agencies within or without the Commonwealth.
The Division may charge a reasonable fee to search and provide a comparative analysis of DNA profiles in the data
bank to any authorized law-enforcement agency outside of the Commonwealth.
Unauthorized uses of DNA data bank; forensic samples; penalties Va. Code Ann. § 19.2-310.6 (1990).
Any person who, without authority, disseminates information contained in the data bank shall be guilty of a Class 3
misdemeanor. Any person who disseminates, receives, or otherwise uses or attempts to so use information in the
data bank, knowing that such dissemination, receipt, or use is for a purpose other than as authorized by law, shall be
guilty of a Class 1 misdemeanor.
Except as authorized by law, any person who, for purposes of having DNA analysis performed, obtains or attempts
to obtain any sample submitted to the Division of Forensic Science for analysis shall be guilty of a Class 5 felony.
Expungement when DNA taken for a felony conviction Va. Code Ann. § 19.2-310.7 (2003)
A person whose DNA profile has been included in the data bank pursuant to § 19.2-310.2 may request expungement
on the grounds that the felony conviction on which the authority for including his DNA profile was based has been
reversed and the case dismissed. The Division shall purge all records and identifiable information in the data bank
pertaining to the person and destroy all samples from the person upon receipt of (i) a written request for
expungement pursuant to this section and (ii) a certified copy of the court order reversing and dismissing the
conviction.
Sample required for DNA analysis upon conviction or adjudication of felony (juveniles) Va. Code Ann. §
16.1-299.1 (2003).
A juvenile convicted of a felony or adjudicated delinquent on the basis of an act which would be a felony if
committed by an adult shall have a sample of his blood, saliva or tissue taken for DNA analysis provided the
juvenile was 14 years of age or older at the time of the commission of the offense.
The provisions of Article 1.1 (§ 19.2-310.2 et seq.) of Chapter 18 of Title 19.2 shall apply to all persons and all
DNA samples taken as required by this section, mutatis mutandis.
DNA profile admission in criminal proceeding Va. Code Ann. § 19.2-270.5 (2002)
In any criminal proceeding, DNA (deoxyribonucleic acid) testing shall be deemed to be a reliable scientific
technique and the evidence of a DNA profile comparison may be admitted to prove or disprove the identity of any
person. This section shall not otherwise limit the introduction of any relevant evidence bearing upon any question at
issue before the court, including the accuracy and reliability of the procedures employed in the collection and
47
analysis of a particular DNA sample. The court shall, regardless of the results of the DNA analysis, if any, consider
such other relevant evidence of the identity of the accused as shall be admissible in evidence.
6 VAC 20, Agcy. Sum.
DIVISION OF FORENSIC SCIENCE (formerly a Division of the Department of General Services)
The Division of Forensic Science is authorized to provide forensic laboratory research and scientific services in
criminal matters and advanced training to law-enforcement agencies in the collection and preservation of evidence
and in breath alcohol testing. It is authorized to establish a DNA testing program to determine identification
characteristics specific to an individual and to store and maintain the resulting identification profiles in a DNA data
bank. Code of Virginia, Title 9.1, Chapter 1, Article 2; Title 19.2, Chapter 18, Article 1.1. The division is authorized
to (i) prescribe forms setting forth the procedure to obtain an independent analysis of blood samples that have been
drawn from persons arrested for driving under the influence of alcohol or drugs; (ii) approve laboratories for
independent blood tests made at the request of accused persons; (iii) license persons to administer breath tests; and
(iv) prescribe methods and equipment for breath tests. Code of Virginia, Title 18.2, Chapter 7, Article 2.
VI. The Use of Genetic Information in Other Contexts
Human Cloning Va. Code Ann. § 32.1-162.21-2 (2001)
"Cloning" means the production of a precise genetic copy of a molecule, including deoxyribonucleic acid (DNA), or
of chromosomes.
"Human cloning" means the creation of or attempt to create a human being by transferring the nucleus from a human
cell from whatever source into an oocyte from which the nucleus has been removed.
A. No person shall (i) perform human cloning or (ii) implant or attempt to implant the product of somatic cell
nuclear transfer into a uterine environment so as to initiate a pregnancy or (iii) possess the product of
human cloning or (iv) ship or receive the product of a somatic cell nuclear transfer in commerce for the
purpose of implanting the product of somatic cell nuclear transfer into a uterine environment so as to
initiate a pregnancy.
B. This section shall not be construed to restrict biomedical and agricultural research or practices unless
expressly prohibited herein, including research or practices that involve the use of (i) somatic cell nuclear
transfer or other cloning technologies to clone molecules, including DNA, cells, or tissues; (ii) gene
therapy; or (iii) somatic cell nuclear transfer techniques to create animals other than humans.
C. In addition to any other penalty provided by law, any person violating the provisions of this section shall be
liable for a civil penalty in an amount not to exceed $50,000 for each incident.
Virginia Biotechnology Research Act: Limitation on local regulation
Va. Code Ann. § 2.2-5509 (2001)
No locality shall enact any regulation or ordinance regulating or prohibiting (i) the planned introduction of
genetically engineered organisms into the environment or (ii) biotechnology research activities; however, the siting
of biotechnology research activities shall be subject to the zoning and land-use laws and regulations of the localities
in which such activities are conducted, the Uniform Statewide Building Code (§ 36-97 et seq.), the Statewide Fire
Prevention Code (§ 27-94 et seq.), local public utility and public works ordinances and regulations of general
application, and local tax ordinances of general application.
Taxation: Innovative high technology industries; specific activities.
23 VAC 10-210-765 (1986)
C. Biotechnology. Persons engaged in research and development in the fields of biotechnology and genetic
engineering with the ultimate goal of advancing knowledge or technology in those fields, developing new products,
technology or processes, developing new uses for existing products, technology or processes, or improving existing
products, technology or processes are generally entitled to the research exemption set forth in 23 VAC 10-210-3070
through 23 VAC 10-210-3074.
Statutory Authority: §§ 58.1-203, 58.1-609.5(6) and 58.1-609.5(7) of the Code of Virginia.
48
References
1.See Clive Cookson, Man of the Year: Craig Venter, FIN. TIMES, Dec. 30/31, 2000, at 10.
2.See Francis S. Collins & Victor A. McKusick, Implications of the Human Genome Project for Medical Science,
285 JAMA 540 (2001) (July 27, 2001) <http://jama.ama.assn.org/issues/v285n5/ffull/jsc00413.html>. The total
federal investment in the Human Genome Project is 90 million. See Frederic Golden, Good Eggs, Bad Eggs, TIME,
Jan. 11, 1999, at 56.
3.See On Human Nature, THE ECONOMIST, Feb. 17, 2001, at 79. The figure Celera gives is 26,588; the public
program, 31,000. See id. These figures are two to three times lower than initially expected. By comparison, a
mustard plant has 25,000 genes and a roundworm 19,099. See Sharon Begley, Solving the Next Genome Puzzle,
NEWSWEEK, Feb. 19, 2001, at 52-53.
4.See National Human Genome Research Institute, Glossary of Genetic Terms (Feb. 20, 2001)
<http://www.nhgri.nih.gov/DIR/VIP/Glossary/pub_glossary.cgi?key=gene&view_value_pair=on>.
5. See Oak Ridge National Laboratory, Human Genome Project Progress (Apr. 23, 2004)
<http://www.ornl.gov/sci/techresources/Human_Genome/project/progress.shtml>
6.White House Press Briefing by Neal Lane, Francis Collins, Craig Venter, and Ari Patrinos, June 26, 2000 (Feb.
20, 2001) <http://www.ornl.gov/hgmis/project/clinton3.htm> (statement by Dr. Collins). See Oak Ridge National
Laboratory, Human Genome Project Progress (Apr. 23, 2004)
<http://www.ornl.gov/sci/techresources/Human_Genome/project/progress.shtml>.
7. See Francis S. Collins & Victor A. McKusick, Implications of the Human Genome Project for Medical Science,
285 JAMA 540 (2001) (July 27, 2001) <http://jama.ama.assn.org/issues/v285n5/ffull/jsc00413.html>. The total
federal investment in the Human Genome Project is 90 million. See Frederic Golden, Good Eggs, Bad Eggs, TIME,
Jan. 11, 1999, at 56.
8. See Andy Coghlan & Nell Boyce, The End of the Beginning, 167 NEW SCIENTIST 4 (2000).
9.See Collins & McKusick, supra note 2. About 3-4% of the federal investment in the Human Genome Projects
goes to the ELSI program. See Golden, supra note 2, at 56.
10.See LeRoy Hood & Lee Rowen, Genes, Genomes, and Society, in GENETIC SECRETS 3, 10-11 (Mark Rothstein,
ed., 1997).
11.See Denise Casey, What Can the New Gene Tests Tell Us?, 36 JUDGE’S J. 3 (1997) (Feb. 20, 2001)
<http://www.ornl.gov/TechResources/Human_Genome/publicat/judges/judge.html>.
12.See Oak Ridge National Laboratory, Potential Benefits of Human Genome Project Research (Feb. 5, 2001)
<http://www.ornl.gov/hgmis/project/benefits.html>
13.See id.
14.See SECRETARY’S ADVISORY COMMITTEE ON GENETIC TESTING (SAGCT), ENHANCING THE OVERSIGHT OF
GENETIC TESTS: RECOMMENDATIONS OF THE SAGCT 3 (2000) (Feb. 20, 2001)
<http://www4.od.nih.gov/oba.sacgt.htm>. The Committee is overseen by the National Institutes of Health.
15.See id. at 6.
16.See id.
17.See Muin J. Khoury et al., Challenges in Communicating Genetics: A Public Health Approach, 2 GENETICS IN
MED. 198, 199 (2000).
18.See id.
19.See id. at 200.
20.See id. at 199.
49
21.See id. at 200.
22.See Centers for Disease Control, Using Genetic Information to Improve Health and Prevent Disease (Feb. 20,
2001) <http:// www.cdc.gov/genetics/info/factshts/geneinfo.htm>.
23.See Robin Lloyd, Lab on a Chip May Turn Police Into DNA Detectives, WASH. POST, Mar. 1, 1999, at A9.
24.Id.
25.Id.
26.See Oak Ridge National Laboratory, DNA Forensics (Feb. 5, 2001)
<http://www.ornl.gov/hgmis/elsi/forensics.html>.
27.See id. A forensic use of DNA not related to human genetics is to detect organisms such as bacteria that pollute
the environment or food. DNA can also help identify endangered and protected species or evaluate the pedigree of
seed or livestock breeds.
28. See Gregg Easterbrook, The Myth of Fingerprints, NEW REPUBLIC, July 31, 2000, at 20.
29.See Lloyd, supra note 24,at A9.
30.See Oak Ridge National Laboratory, supra note 26.
31.See id.
32. NATIONAL COMMISSION ON THE FUTURE OF FORENSIC DNA EVIDENCE, THE FUTURE OF FORENSIC DNA
TESTING: PREDICTIONS OF THE RESEARCH AND DEVELOPMENT WORKING GROUP 35 (2000) (Feb. 20, 2001)
<http://www.ojp.usdoj.gov/nij/pubs-sum/183697.htm>.
33.See Lawrence O. Gostin & James G. Hodge, Jr., Genetic Privacy and the Law: An End to Genetics
Exceptionalism, 40 JURIMETRICS J. 21, 25 (1999).
34. See id.
35. See Gostin & Hodge, supra note 33, at 22.
36. See id. at 21.
37. See H. Markel, The Stigma of Disease: Implications of Genetic Screening, 93 AM. J. MED. 209 (1992).
38.See Nancy E. Kass, The Implications of Genetic Testing for Health and Life Insurance, in GENETIC SECRETS,
supra note 17, at 301.
39. See id.
40. See id. at 305.
41. See id. at 306.
42. See Dana Hawkins, Dangerous Legacies; New Genetic Tests Provide Fresh Grounds for Discrimination, U.S.
NEWS AND WORLD REP. (Nov. 10, 1997) (visited Feb. 3, 2001)
<www.usnews.com/usnews/nycu/health/hegene.htm>.
43. See D.W. Light, The Practice and Ethics of Risk-Rated Health Insurance, 267 JAMA 2503, 2504 (1992).
44.See American Academy of Pediatrics, A Report From the Newborn Screening Task Force Convened in
Washington DC, May 10-11, 1999, 106 PEDIATRICS 383 (2000).
45. N.C. GEN. STAT. § 95-28.1 (2001); FLA. STAT. ch. 48.075 (2001); LA. REV. STAT. ANN. § 23:1001 (West 2001);
N.Y. CIV. RIGHTS LAWS § 48-a (McKinney 2001).
46.N.J. STAT. ANN. § 10:5-12 (West 2001).
47.OR. REV. STAT. § 659.227 (2001).
48.ARIZ. REV. STAT. §§ 20-248, 248.02, 253 (2001).
50
49.MONT. CODE ANN. § 33-18-206 (2001).
50.A. 1888, Reg. Sess. (Cal. 2001).
51.A. 515, Reg. Sess. (Wis. 2001).
52.S. 483, Reg. Sess. (Wis. 2001).
53.IOWA CODE § 729.6 (2001); R.I. GEN. LAWS § 28-6.7-1 to 4 (2001).
54.S. 1146, Reg. Sess. (Cal. 2001).
55.S. 58, Reg. Sess. (Colo. 2001).
56.OR. REV. STAT. § 659.700 to 720 (2001).
57.N.J. STAT. ANN. § 17B:30-12 (West 2001).
58.N.J. STAT. ANN. § 10:5-43 to 49 (West 2001).
59.UNIVERSITY OF ILLINOIS INSTITUTE OF GOVERNMENT AND PUBLIC AFFAIRS, THE CHALLENGES OF HUMAN
CLONING FOR PUBLIC POLICY IN ILLINOIS (2001).
60.CAL. HEALTH & SAFETY CODE §§ 24185 to 24189 (West 2001).
61.MICH. COMP. LAWS §§ 333.26401 to 26406 (2001); R.I. GEN. LAWS §§ 32-16.4-1 to 4 (2001); LA. REV. STAT. §
40-1299.36.6 (West 2001).
62.CONN. GEN. STAT. §§ 38a -476, 816, 46a-60 (2001); 215 ILL. COMP. STAT. § 5/356v (2001); 410 ILL. COMP.
STAT. § 513/1 to 45 (2001).
63.ARIZ. REV. STAT. § 41-1463 (2001); FLA. STAT. ch. 626.9706, 627.4301, 636.0201, 641.438, 6419, 31071, and
31073 (2001); HAW. REV. STAT. §§ 431-10a-118, 432-1-607, 432d-26 (2001); IND. CODE §§ 27-4-1-4(23), 27-8-261 to 11, 27-1-2-3 (2001); KAN. STAT. ANN. § 40-2259 (2001); LA. REV. STAT. § 213.7 (2001); NEV. REV. STAT. §§
689a.417, 689b.069, 689c.076, 198 (2001); TENN. CODE ANN. §§ 56-7-2701 to 2708 (2001); TEX. LAB. CODE ANN.
§ 21-402 (Vernon 2001); VT. STAT. ANN. tit. 8, § 4724, tit. 18, §§ 18:9333 to 9334 (2001).
64.DEL. CODE ANN. tit. 18, § 2317, tit. 19, §§ 19-701 to 711 (2001); KAN. STAT. ANN. §§ 44-1002, 1009 (2001);
KY. REV. STAT. ANN. §§ 304.17a-200, 220, 230, 304.12-085 (Michie 2001); ME. REV. STAT. ANN. tit 5, §§ 19301 to
2, tit. 24A, §§ 2159-C(2), 2204, 2850-C, tit. 22, § 1711-C (West 2001); MO. REV. STAT. §§ 375.1300 to 1312
(2001); N.M. STAT. ANN. § 24-21-1 to 7 (Michie 2001); OKLA. STAT. tit. 36, §§ 3614.1 to 4 (2001); R.I. GEN. LAWS
§§ 27-18-52, 27-19-44, 27-20-39, 27-41-53 (2001); S.C. CODE ANN. § 38-93-10 (Law. Co-op. 2001).
65. S. 774, Reg. Sess. (Md. 2001); MONT. CODE ANN. §§ 33-18-206, 33-18-901 to 903 (2001).
66.S. 589 to 591, 593 to 595, 815, Reg. Sess. (Mich. 2001).
67
VA. CODE ANN. § 38.2-109 (Michie 1997).
68
Gudnason v. Life Ins. Co. of N. Am. , 343 S.E.2d 54 (Va. 1986).
69
VA. CODE ANN. § 38.2-503.4(A) (Michie 1996).
70
Id.
71
Id.
72
VA. CODE ANN. § 38.2-508.4(B) (Michie 1996).
73
Id.
74
VA. CODE ANN. § 32.2-508.4(C) (Michie 1996).
75
VA. CODE ANN. § 38.2-613(D) (Michie 2001).
76
H.D. 1216, Reg. Sess. (Va. 2004).
77
S. 650, 2004 Reg. Sess. (Va. 2004).
51
78
VA. CODE ANN. § 40.1-28.7:1(A) (Michie 2002).
79
Id.
80
VA. CODE ANN. § 40.1-28.7:1(D) (Michie 2002).
81
VA. CODE ANN. § 40.1-28.7:1(B) (Michie 2002).
82
Id.
83
VA. CODE ANN. § 20-49.1 (Michie 1998).
84
VA. CODE ANN. § 63.2-1913 (Michie 2002).
85
VA. CODE ANN. § 20-49.3 (Michie 1997).
86
VA. CODE ANN. § 64.1-5.2 (Michie 1999); Va. Code Ann. § 20-49.1 (Michie 1998).
87
VA. CODE ANN. § 20-49.10 (Michie 2001).
88
Id.
89
VA. CODE ANN. § 32.1-286 (Michie 1999).
90
Id.
91
VA. CODE ANN. § 63.2-1247 (2002).
92
H.D. 305, Reg. Sess. (Va. 2004).
93
H.D.J. Res. 84, Reg. Sess. (Va. 2004).
94
H.D.J. Res. 20, Reg. Sess. (Va. 2004).
95
VA. CODE ANN. § 32.1-65 (Michie 2002). The text of this statute are effective one year after appropriation funds
have been secured.
96
Id.
97
H.D. 1133, Reg. Sess. (Va. 2004).
98
Didato v. Strehler, 554 S.E.2d 42 (Va. 2001).
99
12 VA. ADMIN. CODE § 5-410-440 (West 1995).
100
VA. CODE ANN. § 32.1-66 (Michie 1988).
101
Id.
102
VA. CODE ANN. § 32.1-67 (Michie 2000).
103
Id.
104
H.D.J. Res. 164, Reg. Sess. (Va. 2004).
105
VA. CODE ANN. § 32.1-67.1 (Michie 1988).
106
Id.
107
VA. CODE ANN. § 32.1-69.1(A) (Michie 1994).
108
Id.
109
Id.
110
VA. CODE ANN. § 32.1-68(A) (Michie 1979).
111
VA. CODE ANN. § 32.1-68(B) (Michie 1979).
112
VA. CODE ANN. § 32.1-68(C) (Michie 1979).
52
113
VA. CODE ANN. § 32.1-69 (1979).
114
12 VA. ADMIN. CODE § 5-190-440 (West 1990).
115
Id.
116
12 VA. ADMIN. CODE § 5-190-140 (West 1990).
117
12 VA. ADMIN. CODE § 5-550-120 (2003).
118
Id.
119
Glascock v. Laserna, 439 S.E. 2d 380 (Va. 1994).
120
Naccash v. Burger, 290 S.E.2d 825 (Va. 1982).
121
Miller v. Johnson, 343 S.E.2d 301 (Va. 1986).
122
Id., at 305.
123
Id.
124
VA. CODE ANN. § 19.2-310.2:1 (Michie 2004).
125
VA. CODE ANN. § 19.2-310.2 (Michie 2003).
126
VA. CODE ANN. § 16.1-299.1 (2003).
127
VS. CODE ANN. § 19.2-310.5 (Michie 2003).
128
Id.
129
VA. CODE ANN. § 19.2-310.3:1 (Michie 2004).
130
VA. CODE ANN. § 19.2-310.4 (Michie 2003).
131
VA. CODE ANN. § 19.2-310.6 (Michie 1990).
132
Id.
133
VA. CODE ANN. § 19.2-270.5 (Michie 2002).
134
VA. CODE ANN. § 19.2-310.7 (Michie 2003).
135
VA. CODE ANN. § 32.1-162.21-2 (Michie 2001).
136
Id.
137
VA. CODE ANN. § 32.1-162.21-2(A) (Michie 2001).
138
VA. CODE ANN. § 32.1-162.21-2(B) (Michie 2001).
139
VA. CODE ANN. § 2.2-5509 (Michie 2001).
140
23 VA. ADMIN. CODE § 10-210-765 (West 1986).
53