Running Head: ATTITUDES TOWARD GENETIC TESTING IN THE WORKPLACE
Employer and Employee Attitudes toward Genetic Testing in the Workplace
By Jessica Schwartz
Barnard College of Columbia University
12/21/12
ATTITUDES TOWARD GENETIC TESTING IN THE WORKPLACE
Abstract
The present study aimed to examine both employer and employee attitudes
concerning the disclosure of genetic testing results. This endeavor was inspired in light of
current standards that limit the individual’s right to privacy with regard to the results of
genetic tests and previous studies, which demonstrate that this may cause both physical
and psychological harm to affected individuals. This study surveyed employers and
employees from workplaces subject to and exempt from the Genetic Information
Nondiscrimination Act (GINA). One hundred employers and five hundred employees
completed surveys meant to assess their feelings about genetic testing and the effects of the
employer-employee relationship and prescribed government standards. It was found that
employees reported increased willingness to undergo genetic testing if they were not
required to disclose results to their employers. In addition, the results showed that GINA
employers were more willing to hire those testing positive for genetic conditions than were
non-GINA employers. Finally, it was found that GINA employers were less likely to support
genetic testing mandates for new employees than non-GINA employers. These findings
highlight the importance of the individual’s right to privacy with respect to genetic testing.
In order to minimize harm, in this case discrimination in the workplace, and maximize
welfare, encouraging proactive health precautions, individuals must reserve the sole right
to disclose genetic testing results at their own discretion.
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Introduction
Background
For centuries, scientists worked to unlock the secrets of the human genome. Since
Watson and Crick’s discovery of the double helix structure of DNA, countless scientific and
medical studies have focused on understanding the intricacies of genetic material and the
direct connections between genes and the human body. In 1990, researchers began the
Human Genome Project, a thirteen-year long program, which aimed to identify every gene
comprising human DNA (ACOG Committee on Ethics, 2008). Emerging with a
comprehensive list of 25,000 genes and the characteristics they encode, researchers
accomplished a major scientific feat.
In the 1970s, scientists began developing techniques to isolate and identify
fragments of viral DNA for the purpose of experimental research (Devore, 1992). These
techniques were later refined and adapted for human DNA, opening a new field of medical
inquiry. Since then, incorporating the information gained through the Human Genome
Project, over 1200 genetic tests have been created to help physicians diagnose more than
1000 diseases (“Genetic Discrimination,” 2012). Genetic tests were first used in
reproductive technology, both to identify prenatal conditions in in-utero fetuses and also to
determine parents’ carrier status for lethal or severely debilitating conditions. More
recently, genetic technology has been expanded to allow predictive testing for numerous
conditions in adults, often presenting without symptoms (Lerman et al., 2002).
Early Ethical Issues
Although genetic testing has continued to grow in scope over time, many critics
have pointed out the ethical issues that stem from this burgeoning movement. Early
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arguments focused on the social disparity of testing in reproductive medicine, claiming that
information about testing options was only given reliably to patients of physicians in
private practice. In addition, critics employing the principle of equality asserted that high
costs further precluded patients in lower socioeconomic groups from choosing to use
genetic testing (Singer, Antonucci, & Van Hoewyk, 2004). Some staunch opponents
espoused the extreme eugenic view that genetic testing permitted parents to select only the
most ideal fetuses to bring to full term (Devore, 1992). Despite these criticisms, an
overwhelming majority of experts and the general public support the use of genetic testing
for reproductive purposes (Lerman, Croyle, Tercyak, & Hamann, 2002).
Genetic Testing Mandates
More recently, the ethical implications of predictive testing have proven
increasingly divisive. Two debates, in particular, have dominated discussions about the
benefits and costs of the knowledge that can be gained from predictive genetic testing.
First, experts disagree about whether a mandatory battery of genetic tests should be
administered as part of a routine health screening. Whereas testing was once reserved only
for those individuals with a strong family history of certain cancers or chronic, adult-onset
conditions such as Parkinson’s Disease, studies have noted a steady increase in the number
of people undergoing genetic testing since 1990, which supporters have used to indicate
growing public acceptance of testing (Singer, Couper, Raghunathan, Van Hoewyk, &
Antonucci, 2008). Current technology enables physicians to order genetic tests for
conditions varying from male pattern baldness to colon and breast cancer. A standard
battery would likely take into account common diseases based on the gender, race and age
of the patient (“Genetic Discrimination,” 2012). Operating under the principle of
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beneficence, which supports actions that promote the welfare of other people, proponents
of mandatory testing argue that data collected from genetic tests of a willing public could
serve as an invaluable foundation for in-depth research studies about the incidence and
prevalence of various conditions in the general population (Beauchamp & Childress, 2008).
Obtaining data and knowledge, they claim, would likely lead to further scientific advances,
treatments and cures for diseases that have long afflicted human beings, reinforcing the
beneficial contributions to public welfare (Devore, 1992). Conversely, those who oppose
genetic testing mandates invoke the principle of nonmaleficence, which promotes actions
that do not cause needless harm or injury to others (Beauchamp & Childress, 2008). They
argue that genetic testing is most effective in only a small number of cases and, otherwise,
may elicit unwarranted harm, worry or anxiety. For instance, they cite that a woman with a
strong documented family history of breast cancer will likely benefit from a mandatory test
for the BRCA1 and BRCA2 genes. A positive result would allow her to have prophylactic
mastectomy and oophorectomy, thus virtually eliminating her cancer risk. However, a
person who tests positive for a particular gene will not necessarily develop the associated
disease. A sizeable portion of the population, even without family history, possesses the
BRCA1 or BRCA2 genes and will never have cancer. For these women, a positive test result
may lead to unnecessary prophylactic surgery and needless persistent anxiety about
becoming sick (ACOG Committee on Ethics, 2008). Additionally, opponents stress that
information about genetic testing is widely available via medical professionals and written
materials and that those at high risk would likely pursue testing on their own without
mandate (Devore, 1992). In this scenario, and countless similar examples, mandatory
genetic testing might inspire more physical and psychological harm than good. Currently,
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there are no formal plans to require genetic testing for the general public, but medical,
scientific and political leaders must keep these ethical concerns in mind as they continue to
debate and, potentially, make recommendations for the future.
Disclosure of Genetic Testing Results
Perhaps even more pressing than the debate over mandatory testing is that
surrounding disclosure of results. The right to privacy is founded in the ethical principles of
autonomy and respect for persons. As in autonomy, individuals reserve the right to be selfdetermining about the personal information that is made known to members of the public
(University of Miami Privacy/Data Protection Project, 2005). Furthermore, non-intrusion
underlies a fundamental respect for the individual as a unique entity (Keggereis, 1984).
These foundational principles would seem to include all health information, yet the medical
standard of privacy for genetic material is somewhat mixed.
New York State law currently gives individuals the right to access their personal
medical records. These records include all physical health information along with test
results from blood, genetic and other assessments. They cannot be viewed by anyone other
than the individual and the associated health providers (“Genetic Testing and Screening in
the Age of Genomic Medicine,” 2012). In addition, the Health Insurance Portability and
Accountability Act of 1996 (HIPAA) prevents entities like health insurance companies from
disclosing identifiable health information to anyone other than the individual who is the
subject of the information. HIPAA also protects individuals from being denied health
insurance coverage as part of a group plan following the results of a medical examination
or adverse test result (“Summary of the HIPAA Privacy Rule,” 2012). However, these
provisions are subject to certain exceptions. For instance, the New York State Partner
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Notification Law, regarding HIV disclosure, requires those who test positive for the virus to
report their status to their sexual or needle-sharing partners and their health insurance
companies, although coverage is protected under HIPAA. Individual plans may not cover
HIV treatment expenses (“Legal Disclosure,” 2012). In this case, the effective breach of
health privacy laws is explained directly by the principle of nonmaleficence. Partners and
insurance companies must be informed of positive HIV status in order to reduce the
potential harm done to the citizens and institutions of society. The personal right to privacy
is outweighed by the duty to avoid causing harm.
Stances on Genetic Testing and Disclosure
There is much disagreement in the medical community about the way in which
genetic testing information should be handled. First, some medical professionals hold that
results from genetic tests are no different from those of any other test, such as a blood
pressure or cholesterol check. All of these assessments, they argue, reveal similar
information about the inner workings of the human body. Refuting the claim that genetic
tests should warrant a special disclosure protocol because of their predictive power, they
point to similar predictive diagnoses that can be made for diabetes from high blood sugar
values or heart disease from high cholesterol levels (Barnoy & Tabak, 2007). These
conditions require immediate medical interventions without which the individual will
suffer, perhaps even more so than those who test positive for certain genetic conditions. In
line with this view, the privacy of genetic testing results need not differ from the standard
medical recommendations and disclosure should be entirely at the discretion of the tested
individual.
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However, many argue that the results of genetic testing not only have the potential
to cause harm to the tested individual, but also to others associated with that individual,
thus warranting privacy breaches similar to those instituted for HIV disclosure. While there
is no single established protocol that requires those who are genetically tested to disclose
their results, current recommendations strongly suggest that if a test reveals a serious,
immediate and foreseeable harm, the individual has a duty to inform. A medical
professional may intervene by disclosing results to family members or insurance
companies if attempts to elicit voluntary disclosure have failed, if there is a high probability
that harm will occur before the at-risk relative discloses, if this harm will be grave or fatal
and if this information can be released only to those who are directly affected (ACOG
Committee on Ethics, 2008).
While some feel that genetic testing results are no different than the values from
other routine medical assessments, still others firmly believe that they should be subject to
stricter standards. Genetic exceptionalism is the view that genetic information must be
treated differently than results gained from any other medical assessment. Exceptionalists
justify this belief because genetic tests can somewhat predict a person’s medical future,
apply to the individual as well as family members, can be used to discriminate against
individuals from particular groups and may cause serious psychological distress (Green &
Botkin, 2003). Current practice supports genetic exceptionalism, with physicians strongly
suggesting that those interested in having themselves genetically tested for any disorder
follow a designated procedure, which includes genetic counseling both before and after the
test and appropriate disclosure of results if harm is imminent (“Genetic Discrimination,”
2012).
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Genetic Testing and Discrimination: Employers and Insurers
While genetic exceptionalism addresses harms posed to family members of an
affected individual, it also extends to harms that the individual may suffer personally as a
result of disclosure. In addition to the physical and emotional toll of diagnosis, these
include stigmatization or discrimination based on test results. Prior to 2009, no national
law existed to protect citizens from discrimination on genetic grounds, yet thousands of
official complaints were made to state and federal authorities. Complaints mostly reported
firing or differential treatment by employers and dropped or reduced insurance coverage
following either willing or unwanted disclosure of genetic testing results. Employers and
insurers view this debate mostly from an economic standpoint, seeking to maximize their
monetary and time investments in people with the strongest health and genetic
background (Devore, 1992). The first genetic-employment discrimination case was settled
by the United States Equal Employment Opportunity Commission (EEOC) in 2001. EEOC
sued the Burlington Northern Santa Fe Railroad (BNSF) for covertly testing employees for a
genetic condition that causes carpal tunnel syndrome. While EEOC argued that the tests
were being performed to make a comprehensive list of employees to fire, those whose
work would be impaired or prevented by carpal tunnel, BNSF claimed that it was simply
conducting the screenings to monitor the source of employees’ reported physical problems,
whether imposed by work conditions or genetic factors. BSNF’s arguments were struck
down and they settled the case, agreeing to all terms sought by EEOC. In another instance, a
woman was fired from her job as a social worker less than two weeks after she mentioned
that her mother had died from Huntington’s Disease and that she had a fifty percent chance
of having it. With respect to health insurance, a mother reported that her provider dropped
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coverage for her son when he was diagnosed with Fragile X Syndrome (“Cases of Genetic
Discrimination,” 2012).
Cases like those previously mentioned highlight exceptionalist reasoning, as they
illustrate the complications that can arise from genetic testing. While telling family
members they are at risk for a genetic disease may be emotionally difficult, the existing
bonds discourage stigmatization or discrimination within the family unit. When employers
or insurers receive information about testing results, they exert the authority to limit
current and future employment, financial stability and access to healthcare, which begs the
question: how much personal health information, if any, should these external entities be
permitted to access? As the aforementioned cases illustrate, genetic diseases have caused
blatant discrimination in these critical forums, so much as to deter people from being
tested at all. Published research about concerns surrounding genetic testing cites the fears
of denied employment and health insurance as major deterrents for individuals who decide
against genetic testing (Christenson, 1998). The growing body of evidence pertaining to
proven genetic discrimination verifies these concerns among members of the general
public.
Genetic Testing in the Law
In response to growing public awareness of the discriminatory repercussions of
genetic testing, several legal measures were implemented to protect the rights of those
who are tested. While some states enacted laws governing genetic discrimination in the
early 1990s, in February 2000, President Bill Clinton issued Executive Order 13145, the
first legal protection of genetic information at the national level. The Order prohibits
discrimination against any federal employee based on genetic information and, further,
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prohibits any inquiries about the genetic services sought by those working for the federal
government (“Genetic Discrimination,” 2012). Following this provision, in May 2008,
President George W. Bush signed the Genetic Information Nondiscrimination Act (GINA),
which extended the employment protections of EO 13145 to all Americans. Furthermore,
GINA prohibits discrimination in health coverage, preventing insurance companies from
requesting information about an individual’s genetic background and those of his/her
family members and from using genetic information to decide rate changes, coverage
adjustments and preexisting conditions (Department of Health and Human Services, 2009).
Although these laws address some major privacy issues that arise from genetic
testing, their protection is not comprehensive. GINA provisions do not prevent employers
with fifteen or fewer employees from requesting and using genetic information for
purposes of hiring, firing or promotion. In addition, GINA provisions do not extend to life
insurance, disability insurance, long-term care insurance or individual health insurance.
These exclusions allow companies offering the preceding insurance plans to discriminate
on the basis of genetics when making decisions about coverage, rates and preexisting
conditions. GINA is not retroactive, meaning that all those who were subject to
discrimination before the law was signed cannot seek protection under its terms
(Department of Health and Human Services, 2009). Finally, the Americans with Disabilities
Act of 1990, which briefly mentions genetic conditions, does not protect individuals who
are genetically tested prior to developing overt symptoms (Natowicz, Alper, & Alper, 1993).
These fundamental lapses in protection violate the privacy of those who test positive for a
genetic condition and, further, place them at increased risk for discrimination in the
workplace and with insurance coverage.
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Objective
Previous research has been largely informational, summarizing the various ethical
issues implicit in the topics of genetic testing and disclosure. Several studies have assessed
attitudes regarding genetic testing among different racial, ethnic and gender groups and a
few have explored issues from the insurer’s point of view (Singer et al., 2004). To date, no
published literature has formally examined the effects of genetic testing disclosure in the
employer-employee relationship. This analysis is of critical importance because laws do
not protect those who work in small companies and most formal complaints have involved
genetic discrimination in the workplace.
The present study aimed to explore employee attitudes in terms of willingness to
seek genetic testing as a function of perceived job consequences and employer attitudes in
regard to differential treatment of employees based on genetic information. This study
sought to assess the dichotomy between personal privacy and disclosure in the employeremployee relationship. Through this study, the researcher aimed to supplement the
literature with data from a population not previously examined, highlighting the efficacy of
the GINA law in practice. It was of particular interest to the researcher to assess the parity
or disparity of attitudes toward disclosure of genetic testing results and the GINA
provisions for workplaces, therefore places of employment both subject to and exempt
from GINA were included in the study. It was hypothesized that employees would be more
willing to submit to genetic testing if they were not required to disclose the results to their
employers than if disclosure was mandated. Additionally, it was posited that employers in
workplaces subject to GINA provisions, hereby known as “GINA employers” would
demonstrate less bias in their attitudes toward employees with regard to genetic
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information than would employers in workplaces exempt from GINA provisions, hereby
known as “non-GINA employers.”
Methods
Subjects
Participants for the study were one hundred employers, fifty from GINA workplaces and
fifty from non-GINA workplaces. The sample included employers representing many fields
of employment including health, law, education, and union occupations. For purposes of
the study, employers were defined as those who were in charge of a set of employees
whether directly or indirectly. In addition, five employees of each participating employer
were selected at random to participate. Age, gender and other demographic information
were not recorded for each participant, as this study served as a preliminary screening
survey of employer and employee attitudes.
Procedures
Potential participants were contacted by telephone interview approximately three months
before the study procedure was to begin. Those who were contacted used this time to look
over the consent information and make final decisions about participation. Once the
researchers had accumulated a complete set of participating employers and employees,
surveys to assess attitudes about genetic testing and disclosure of test results were
distributed via an online link to a closed study form (see Appendix 1). Separate surveys
were given to employers and employees, with each group permitted access to its
corresponding survey only. The employee survey addressed willingness to undergo genetic
testing for three types of conditions if disclosing results to the employer was required or
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not required. The employer survey asked GINA and non-GINA employers about their
attitudes toward hiring asymptomatic employees who tested positive for three types of
genetic conditions and their desire to conduct a standard set of pre-employment genetic
screenings. Participants were informed that the survey link would remain open for one
week and that they were required to submit their responses during this time. After one
week elapsed, researchers tabulated the data from responses in order to analyze the study
results.
Ethical Considerations
All participants were given an online consent form to approve prior to entering the survey.
This form indicated that participation was entirely voluntary. In addition, the form assured
participants that no demographic or other identifying personal information would be
attached to the data after collection. Participants were told that data for the employer and
employees from each workplace would be filed according to an independently assigned
numerical code. Employees were assured that their responses would not be disclosed to
their employers, while employers were told that their responses would not be made
available to their employees or the government.
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Results
Employee Survey
Condition
Definitely Test
Definitely Not Test
100
Equivocal About
Testing
250
Non-fatal,
disabling, no
treatment
Potentially fatal if
no screening
Fatal, no treatment
450
45
5
75
130
295
150
Table 1: Employees Not Required to Disclose to Employer. This table shows the survey
responses for all 500 respondents if not required to disclose genetic testing results to their
employers.
Condition
Definitely Test
Definitely Not Test
50
Equivocal About
Testing
150
Non-fatal,
disabling, no
treatment
Potentially fatal if
no screening
Fatal, no treatment
300
150
50
10
40
450
300
Table 2: Employees Required to Disclose to Employer. This table shows the survey
responses for all 500 respondents if required to disclose genetic testing results to their
employers.
Employer Survey
Condition
Deny Employment
0
Hire with
Hesitation
15
Hire Without
Hesitation
35
Non-fatal,
disabling, no
treatment
Potentially fatal if
no screening
Fatal, no treatment
0
10
40
5
20
25
Table 3: Hiring Decisions for GINA Employers. This table displays the reported hiring
decisions of the 50 employers subject to GINA regulations.
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Condition
Deny Employment
20
Hire with
Hesitation
17
Hire Without
Hesitation
13
Non-fatal,
disabling, no
treatment
Potentially fatal if
no screening
Fatal, no treatment
15
20
15
30
15
5
Table 4: Hiring Decisions for Non-GINA Employers. This table shows the reported hiring
decisions for the 50 employers exempt from GINA regulations.
Condition
Non-fatal, disabling, no
treatment
Potentially fatal if no
screening
Fatal, no treatment
Mandate Genetic TestingYes
2
Mandate Genetic TestingNo
48
10
40
2
48
Table 5: GINA Employer Attitudes Toward Pre-Employment Genetic Testing. This
table shows the reported attitudes of the 50 GINA employers concerning their desire to
screen new employees for three classes of genetic diseases.
Condition
Non-fatal, disabling, no
treatment
Potentially fatal if no
screening
Fatal, no treatment
Mandate Genetic TestingYes
48
Mandate Genetic TestingNo
2
35
15
48
2
Table 6: Non-GINA Employer Attitudes Toward Pre-Employment Genetic Testing.
This table displays the reported attitudes for the 50 Non-GINA employers concerning their
desire to screen new employees for three classes of genetic diseases.
Results from the study indicate differences in employer and employee attitudes
toward genetic testing. Overall, fewer employees reported that they would consent for
genetic testing if they were required to disclose the results to their employers. In the
disclosure and the non-disclosure conditions, most employees said they would test for a
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potentially fatal condition that can be treated compared to the other types of conditions
(see Tables 1 and 2). Hiring decisions also differed greatly for GINA and non-GINA
employers. GINA employers were more willing to hire those testing positive for any
condition without hesitation when compared with non-GINA employers. Both groups were
most willing to hire those whose conditions could be treated and least likely to hire those
whose diagnoses were fatal (see Tables 3 and 4). With respect to mandatory genetic testing
prior to employment, the vast majority of GINA employers responded that they would not
impose required testing, while the opposite result was observed among non-GINA
employers (see Tables 5 and 6).
Discussion
The results from the present study suggest that attitude differences exist between
employers and employees with respect to the consequences of genetic testing in the
workplace. Employees are wary of having genetic testing done for any condition if they
know that the results will be disclosed to their employer. This outcome corroborates data
obtained in previous research and most likely reflects employees’ fears that genetic testing
will be used against them in the hiring process or course of employment (Christenson,
1998). Perhaps the group that would be the most negatively affected are those with
potentially treatable conditions. If this group of employees hesitates to submit to testing for
fear of being unemployed, they may lose the opportunity to receive preventative
intervention for a treatable disease. Without the benefits of screening tests, diseases such
as breast, ovarian or colon cancer may only be detected when the disease has progressed
beyond a stage where it can be cured. Lack of privacy about medical history as a result of
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mandatory disclosure presents an ethical dilemma for the employee. They may have to
sacrifice personal health and well-being in order to secure economic stability and the
ability to support their families.
Employers in GINA workplaces showed little interest in genetic testing of any kind,
presumably because government regulations prevent them from using employees’ genetic
information as a factor in the hiring process or anytime during the period of employment.
Results clearly indicate that genetic testing in non-GINA workplaces plays a role in hiring
decisions for employers. This outcome strongly suggests that employees in non-GINA
workplaces are discriminated against because of their medical histories. These practices
can force employees to actively avoid obtaining genetic information about themselves,
which could delay the detection of a treatable condition. That non-GINA employers would
overwhelmingly mandate pre-employment genetic testing further confirms the biases
inherent in their employment choices.
This focus on genetic testing information targets an arbitrary segment of the
population for negative treatment in the workplace. While this group should be able to
freely reap the benefits afforded them by advances in medical technology, they may
actually feel forced to resist obtaining information for fear of discrimination. Still other
segments of the population with as yet undetectable genetic abnormalities escape this
differential treatment. Employers may not hire someone with a genetic abnormality that
may remain quiescent for decades, or longer, but may hire someone with a more severe
condition for which no predictive test exists, such as mental illness, cardiovascular disease
or autoimmune disease. In the end, this discriminatory practice may skew the employee
pool to favor employees with types of undetectable genetic diseases over those that are
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detectable. In addition, such discrimination prevents employers from reaping the benefits
of the talents of potential employees who they hesitate to hire and the many years of
productive work they can contribute. This population is also discriminated against because
employers do not equally consider hesitating to hire groups of individuals who engage in
other potentially career-shortening behaviors, such as involvement in extreme sports,
motorcycling, smoking and alcohol consumption that can all jeopardize health, safety and,
therefore, workplace productivity. In short, medical advances have provided information
that the workplace is not yet equipped to handle ethically.
While the results of this study do provide support for the hypotheses, there are
several weaknesses inherent in the design. Due to the sensitive nature of the genetic testing
debate, some respondents may not have expressed their attitudes honestly, specifically the
group of employers. Though consent forms assured all participants that their responses
would remain anonymous and confidential, some employers may not have been willing to
acknowledge that results of genetic testing would likely influence their hiring behavior.
Additionally, because the study did not collect demographic information, it cannot be
determined that the sampled population of employers and employees provides an accurate
and representative cross section of the workforce. Finally, the study did not distinguish
GINA employees from non-GINA employees in data analysis, which may provide further
insight into how government protections further affect their willingness to undergo genetic
testing. Future studies can stratify these attitudes based on demographic information such
as age, gender, race, religion, socioeconomic level and level of education. Future research
can also compare attitudes toward predictive testing for employment with attitudes about
testing for personal use and family planning. In addition, a similar research design can be
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used to evaluate attitudes of insurance companies toward coverage practices with respect
to genetic testing.
Medical advances have yielded the ability to obtain health information, yet society is
still grappling with how to resolve the associated ethical issues. Individuals should not
have to face the dilemma of avoiding obtaining potentially beneficial medical information
for fear of the harm that may come to them in the workplace as a result. In an ideal
situation, these two facets of life should remain separate. Legal statues should protect the
right to privacy for all members of the workforce, regardless of the size of their place of
employment. Such action would uphold autonomy and respect for persons, allowing
individuals to make dignified and informed decisions about their health. In doing so, they
will be spared the needless physical and psychological harm imposed when privacy
breaches sway them away from obtaining medical information. The implications of the
disclosure of genetic testing results found in the present study suggest the following course
of action as a formal protocol for all disclosures henceforth:

In line with genetic exceptionalism, genetic testing results should warrant a
specified set of privacy regulations to protect those who are tested from
harm (including health consequences and discrimination).

Medical professionals should require disclosure only in a case when test
results pose severe, imminent and foreseeable harm to immediate family
members.

Individuals should reserve the sole right to disclose genetic information to
insurance companies and employers. This should extend to all forms of
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insurance and all employers, including those not currently protected under
GINA.

Genetic counseling should be strongly encouraged for those who choose to
undergo genetic testing in order to minimize psychological harm or distress.
This study addressed the topic of genetic testing and disclosure in the workplace.
Preliminary findings indicated that genetic discrimination is likely to occur in settings
where regulations are not in place to protect the right to privacy. This may lead to
unnecessary physical harm following prolonged inaction if employment is at stake. This
research offers support for genetic exceptionalism, which argues that genetic testing
results warrant special consideration when compared to other medical assessments, as
they can powerfully affect the self and others. Ethical guidelines should uphold, without
reservation, the individual’s right to privacy, self-determined disclosure of genetic testing
results, which will prevent harm and promote welfare, following the principles of
beneficence and nonmaleficence.
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Americans with Disabilities Act. American Journal of Human Genetics, 52, 534-535.
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ATTITUDES TOWARD GENETIC TESTING IN THE WORKPLACE
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ATTITUDES TOWARD GENETIC TESTING IN THE WORKPLACE
Appendix 1
Employee Survey
Please respond to the following questions as if you were not required to disclose the results
of genetic testing to your employer.
How likely would you be to consent to testing for the following genetic conditions
1. A non-fatal, disabling condition with no known treatment (such as muscular
dystrophy)
a. Definitely would consent for testing
b. Equivocal about testing decision
c. Definitely would not consent for testing
2. A condition that can be screened for and treated but is potentially fatal if no action is
taken (such as breast or colon cancer)
a. Definitely would consent for testing
b. Equivocal about testing decision
c. Definitely would not consent for testing
3. A fatal condition with no known treatment (such as Huntington’s Disease)
a. Definitely would consent for testing
b. Equivocal about testing decision
c. Definitely would not consent for testing
Please respond to the following questions as if you were required to disclose the results of
genetic testing to your employer.
How likely would you be to consent to testing for the following genetic conditions
4. A non-fatal, disabling condition with no known treatment (such as muscular
dystrophy)
a. Definitely would consent for testing
b. Equivocal about testing decision
c. Definitely would not consent for testing
5. A condition that can be screened for and treated but is potentially fatal if no action is
taken (such as breast or colon cancer)
a. Definitely would consent for testing
b. Equivocal about testing decision
c. Definitely would not consent for testing
6. A fatal condition with no known treatment (such as Huntington’s Disease)
a. Definitely would consent for testing
b. Equivocal about testing decision
c. Definitely would not consent for testing
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ATTITUDES TOWARD GENETIC TESTING IN THE WORKPLACE
Employer Survey
1. In an otherwise qualified job applicant who was asymptomatic but had a positive
genetic test for a non-fatal, disabling condition (such as muscular dystrophy), would
you
a. Deny employment
b. Hire with hesitation
c. Hire without hesitation
2. In an otherwise qualified job applicant who was asymptomatic but had a positive
genetic test for a condition that can be screened for and treated but is potentially
fatal if no action is taken (such as breast or colon cancer), would you
a. Deny employment
b. Hire with hesitation
c. Hire without hesitation
3. In an otherwise qualified job applicant who was asymptomatic but had a positive
genetic test for a fatal condition with no known treatment (such as Huntington’s
Disease), would you
a. Deny employment
b. Hire with hesitation
c. Hire without hesitation
If not prohibited by law, would you mandate pre-employment genetic testing for
1. Non-fatal, disabling conditions (such as muscular dystrophy)
a. Yes
b. No
2. Conditions that can be screened for and treated but are potentially fatal if no action
is taken (such as breast or colon cancer)
a. Yes
b. No
3. Fatal conditions with no known treatment (such as Huntington’s Disease)
a. Yes
b. No
25