NATIONAL CONFERENCE OF INSURANCE LEGISLATORS
PROPOSED GENETIC DISCRIMINATION MODEL ACT
TABLE OF CONTENTS
CHAPTER ONE: TITLE, PURPOSE & DEFINITIONS
Section 101: Short Title
Section 102: Purpose and Scope
Section 103: Definitions
p. 2
p. 2
p. 2
p. 2
CHAPTER TWO: CONSENT
p. 3
CHAPTER THREE: REQUEST AND USE OF INFORMATION
p. 4
CHAPTER FOUR: APPLICATION FOR LIFE INSURANCE
p. 5
CHAPTER FIVE: APPLICATION FOR DISABILITY INSURANCE
p. 5
CHAPTER SIX: CATASTROPHIC DISEASES AND RELATED GENES
p. 6
CHAPTER SEVEN: IMPLEMENTATION
p. 7
CHAPTER EIGHT: RELATION TO OTHER LAWS; EFFECTIVE DATE
Section 801: Determined Violation
Section 802: Rules and Regulations
Section 803: Effective Date
p. 7
p. 7
p. 7
p. 7
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NATIONAL CONFERENCE OF INSURANCE LEGISLATORS
PROPOSED GENETIC DISCRIMINATION MODEL ACT
CHAPTER ONE: TITLE, PURPOSE & DEFINITIONS
Section 101: Short Title
This Act shall be known and may be cited as the "Genetic Discrimination Model Act."
Section 102: Purpose and Scope
This Act shall:
A.
prohibit persons from requesting, obtaining or using genetic tests or information
about an applicant or a blood relative of an applicant in connection with the application for
insurance or to limit, cancel, refuse to renew, increase rates, change terms or otherwise affect
insurance;
B.
provide limited exception to prohibition on inquiry into genetic information when
an applicant is applying for certain types of policies;
C.
require the [Director of the Department of Consumer and Business Services] to
create lists of catastrophic diseases and related genes for purposes of life and disability insurance;
and
D.
specify procedure and criteria for listing diseases and related genes.
Section 103: Definitions
As used in this Act, unless the context requires otherwise:
A.
"Anonymous research" means:
(1)
scientific or medical research conducted in such a manner that the identity
of an individual who has provided a sample, or the identity of an
individual from whom genetic information has been obtained, cannot be
determined; or
(2)
scientific or medical research conducted in accordance with the Federal
Policy for the Protection of Human Subjects with the approval of an
institutional review board established in accordance with that policy.
B.
"Blood relative" means an individual who is:
(1)
related by blood to another individual; and
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(2)
C.
a parent, sibling, son, daughter, grandparent, grandchild, aunt, uncle, first
cousin, niece or nephew of the other individual.
"DNA" means deoxyribonucleic acid.
D.
"DNA sample" means any human biological specimen from which DNA was
extracted, or any human biological specimen that is obtained or retained for the purpose of
extracting and analyzing DNA to determine a genetic characteristic. "DNA sample" includes
DNA from the specimen.
E.
"Genetic characteristic" means any gene or chromosome, or alteration thereof, that
is scientifically or medically believed to cause a disease, disorder or syndrome, or to be
associated with statistically increased risk of development of a disease, disorder or syndrome.
F.
"Genetic information" means information about a gene, gene product, or DNA
derived from genetic tests of an individual or family member.
G.
"Genetic test" means a test for determining the presence or absence of genetic
characteristics in an individual, including tests of nucleic acids such as DNA, RNA and
mitrochondrial DNA, chromosomes or proteins, in order to diagnose a genetic characteristic.
H.
"Insurance provider" means an insurance company, health care service contractor,
fraternal benefit organization, insurance agent, third party administrator, insurance support
organization or other person subject to regulation by the Insurance Code.
CHAPTER TWO: CONSENT
A.
No person shall obtain genetic information from an individual, or from an
individual's DNA sample, without first obtaining informed consent of the individual or the
individual's representative, except:
(1) as authorized by [state law] or comparable provisions of federal criminal law
relating to the identification of persons, or for the purpose of establishing the
identity of a person in the course of an investigation by a law enforcement
agency, a district attorney, a medical examiner or the Criminal Justice
Division of the Department of Justice;
(2) for anonymous research where the identity of the subject will not be revealed;
(3) as permitted by rules of the [Health Division] for identification of deceased
individuals;
(4) as permitted by rules of the [Health Division] for newborn screening
procedures; or
(5) as authorized by statute for the purpose of establishing paternity.
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B.
A physician licensed under [state law] shall seek the informed consent of the
individual or the individual's representative for the purposes of subsection A of this section in the
manner provided by [state law]. Any other licensed health care provider or facility must seek the
informed consent of the individual or the individual's representative for the purposes of
subsection A of this chapter in a manner substantially similar to that provided by [state law] for
physicians.
C.
An insurance provider shall seek the informed consent of the individual or the
individual's representative for the purposes of subsection A of this chapter in the manner
provided by rules adopted by the [Department of Consumer and Business Services]. A person
must seek the informed consent of the individual or the individual's representative for the
purposes of subsection A of this chapter in the manner provided by rules adopted by the [Health
Division].
D.
The [Health Division] may not adopt rules under subsection A(4) of this chapter
that would require the providing of a DNA sample for the purpose of obtaining complete genetic
information used to screen all newborns.
CHAPTER THREE: REQUEST AND USE OF INFORMATION
A.
Notwithstanding [state law], except as provided in chapters 4 and 5 of this Act, a
person may not request, obtain or use a genetic test on or genetic information about an applicant
or a blood relative of an applicant in connection with an application for insurance. For the
purpose of this subsection, a person who inadvertently acquires genetic information through a
health file or other means is not considered to have requested or obtained genetic information if
the person destroys or disposes of that information upon discovering it in the person's possession.
B.
A person may not request, obtain or use a genetic test on or genetic information
about an insured party or a blood relative of an insured party to limit, cancel, refuse to renew,
increase the rate of, affect the terms and conditions of or otherwise affect any insurance policy.
C.
A person may not use information about a person or individual who has requested
or had a genetic test or about the outcome of the test to identify potential customers or to induce
the purchase of insurance.
D.
For the purposes of this chapter, "blood relative," "genetic information" and
"genetic test" have the meaning given those terms in Chapter One, Section 103.
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CHAPTER FOUR: APPLICATION FOR LIFE INSURANCE
A.
If an applicant for life insurance applies for life insurance in an amount greater
than $100,000, a person may:
(1) ask the applicant if said applicant has had a genetic test for one of the genes
related to a disease contained on the list of catastrophic diseases and related genes
described in Chapter 6(A) of this Act for the purposes of life insurance;
(2) ask for the results of that genetic test; and
(3) use the genetic information from that genetic test in determining the proposed
terms of an insurance policy in accordance with standard insurance practices and
principles.
B.
An applicant for life insurance may refuse to answer the questions a person may
ask under subsection A of this chapter. If an applicant refuses to answer such questions as
outlined in subsection A of this chapter, an insurer may refuse to issue a policy to that applicant.
All policies for life insurance in an amount greater than $100,000 must include a provision that
denial of coverage may be based on an applicant's refusal to answer such questions.
C.
If an applicant for life insurance has a history of a disease related to a gene
contained on the list of catastrophic diseases and related genes for the purposes of life insurance
and the application requires disclosure of family history regarding that disease, the applicant may
present the results of a test of that gene as presumptive evidence that the applicant is not
predisposed to the disease.
D.
For the purposes of this chapter, "genetic information" and "genetic test" have the
meaning given those terms in Chapter One, Section 103.
CHAPTER FIVE: APPLICATION FOR DISABILITY INSURANCE
A.
If an applicant for disability insurance applies for a disability policy that provides
for an annual replacement income for full disability of greater than $60,000, a person may:
(1) ask the applicant if said applicant has had a genetic test for one of the genes
related to a disease contained on the list of catastrophic diseases and related
genes for the purposes of disability insurance described in Chapter 6(A) of this
Act;
(2) ask for the results of that genetic test; and
(3) use the genetic information from that genetic test in determining the proposed
terms of an insurance policy in accordance with standard insurance practices
and principles.
B.
An applicant for disability insurance may refuse to answer the questions a person
may ask under subsection A of this chapter. If an applicant refuses to answer such questions as
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outlined in subsection A of this chapter, an insurer may refuse to issue a policy to that applicant.
All policies for disability insurance in an amount greater than $60,000 must include a provision
that denial of coverage may be based on an applicant's refusal to answer such questions.
C.
If an applicant for disability insurance has a history of a disease related to a gene
contained on the list of catastrophic diseases and related genes for the purposes of disability
insurance and the application requires disclosure of family history regarding that disease, the
applicant may present the results of a test for that gene as presumptive evidence that the applicant
is not predisposed to the disease.
D.
For the purposes of this chapter, "genetic information" and "genetic test" have the
meaning given those terms in Chapter One, Section 103.
CHAPTER SIX: CATASTROPHIC DISEASES AND RELATED GENES
A.
The [Director of the Department of Consumer and Business Services] shall create
and maintain two lists relating to catastrophic diseases and related genes as follows:
(1) a list of catastrophic diseases and related genes for the purposes of life
insurance; and
(2) a list of catastrophic diseases and related genes for the purposes of disability
insurance.
B.
An insurer may submit an application for listing a particular gene to the [director].
The application shall include arguments and evidence that the insurer believes support a listing.
C.
The [director] shall submit the application to the [Health Resources Commission].
The [commission] shall recommend to the [director] whether the [director] list a catastrophic
disease and related gene under subsection A of this chapter. The [commission] shall make a
recommendation in favor of listing the disease and related gene, after consulting with genetic,
medical and insurance experts, if the [commission] determines that:
(1) for the purposes of life insurance:
(a) the gene has a correlation with the eventual development of a specific
disease exceeding 80 percent; and
(b) the disease resulting from the gene, given current medical therapy and
technology, poses a probability of death from the disease exceeding 50
percent.
(2) for the purposes of disability insurance:
(a) the gene has a correlation with the eventual development of a specific
disease exceeding 80 percent; and
(b) the disease resulting from the gene, given current medical therapy and
technology, poses a probability of disability from the disease
exceeding 50 percent.
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D.
The [director] may add a catastrophic disease and related gene to a list described
in subsection A of this chapter only upon the recommendation of the [commission].
CHAPTER SEVEN: IMPLEMENTATION
A.
The [Director of the Department of Consumer and Business Services] shall adopt
rules necessary to implement and administer Chapters 1 through 7 of this Act.
CHAPTER EIGHT: RELATION TO OTHER LAWS; EFFECTIVE DATE
Section 801: Determined Violation
A.
Prohibition. No licensee shall knowingly or willfully violate the provisions of this
Act.
B.
Violation. A violation of Chapters 1 through 7 of this Act shall be considered an
unfair trade practice pursuant to state law and subject to the penalties provided by state law.
Section 802: Rules and Regulations. This Act shall be enforced, under state insurance law, in
the case of any person engaged in providing insurance, by the applicable state insurance authority
of the state in which the person is domiciled.
Section 803: Effective Date. This Act is effective on _____.
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