ENGROSSED
COMMITTEE SUBSTITUTE
FOR
Senate Bill No. 218
(By Senators Redd, Burnette, Caldwell, Hunter, Minard, Rowe,
Snyder, Wooton, Facemyer and Mitchell)
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[Originating in the Committee on the Judiciary;
reported February 27, 2002.]
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A BILL to amend chapter sixteen of the code of West Virginia, one
thousand nine hundred thirty-one, as amended, by adding
thereto a new article, designated article forty, relating to
creating a genetic information privacy act; setting forth
short title; establishing legislative findings and intent;
defining terms; providing for confidentiality of the results
of genetic testing; explaining allowable use of genetic test
results by law-enforcement agencies; requiring expungement of
court records in certain circumstances; exempting state police
records from expungement provisions; providing for the
promulgation of rules by the insurance commissioner regarding
use of genetic test results for insurance purposes; clarifying
effect of article on paternity proceedings; restricting use of genetic information by employers; permitting use of genetic
test results for research purposes; prohibiting use of genetic
test results in connection with certain insurance policies;
restricting disclosure of person tested and test results;
establishing cause of action for violation of article; and
clarifying effect of article on causes of action under other
applicable law.
Be it enacted by the Legislature of West Virginia:
That chapter sixteen of the code of West Virginia, one
thousand nine hundred thirty-one, as amended, be amended by adding
thereto a new article, designated article forty, to read as
follows:
ARTICLE 40. GENETIC INFORMATION PRIVACY ACT.
§16-40-1. Short title.
This article may be cited as the "Genetic Information Privacy
Act".
§16-40-2. Legislative findings; intent.
The Legislature finds that:
(1) To effectively protect the results of genetic testing, the
collection and disclosure of these results must be carefully
circumscribed so that persons are assured that the results are not
misused;
(2) The use of genetic testing may become a valuable tool for
the diagnosis of health problems and individuals should be encouraged to submit to genetic testing;
(3) Despite existing laws, rules and professional standards
that require or promote voluntary and confidential use of genetic
information, many members of the public are deterred from seeking
genetic testing because of fear that the information will be
disclosed without consent or will be used in an unfairly
discriminatory manner; and
(4) The public health will be served by facilitating voluntary
genetic testing and ensuring confidential use of the results of
genetic testing in a manner that is not unfairly discriminatory.
§16-40-3. Definitions.
As used in this article:
(1) "Accident and sickness insurance" shall have the same
meaning as set forth in section ten, article one, chapter thirty-
three of this code.
(2) "DNA" means deoxyribonucleic acid, which is a molecule
containing hereditary information that is passed on from one
generation to the next.
(3)(A) "Genetic testing" means a test of a person's DNA
performed to identify the presence or absence of an inherited
variation, alteration or mutation that is associated with a
predisposition to disease, illness or other disorder.
(B) Genetic testing does not include:
(i) Routine physical measurements;
(ii) Chemical, blood and urine analyses that are widely
accepted and in use in clinical practice;
(iii) Tests for use of drugs;
(iv) Tests for the presence of the human immunodeficiency
virus;
(v) Tests for law-enforcement identification purposes;
(vi) Tests given for use in epidemiological or clinical
research conducted for the purpose of generating scientific
knowledge about genes or learning about the genetic basis of
disease or for developing pharmaceutical and other treatments of
disease; or
(vii) Diagnostic tests performed due to the presence of signs,
symptoms, or other manifestations of a disease, illness, impairment
or other disorder: Provided, That the samples and results derived
from testing conducted pursuant to the purposes set forth in this
paragraph may not be used for purposes of further genetic testing
without the express written permission of the person being tested.
(4) "Insurer" means an insurance company, insurance service,
health maintenance organization or other person or entity required
to be licensed by the insurance commissioner pursuant to the
provisions of chapter thirty-three of this code.
(5) "Long-term care insurance" shall have the same meaning as
set forth in section four, article fifteen-a, chapter thirty-three
of this code.
(6) "Disability income insurance" means accident and sickness
insurance that provides benefits for loss of income due to
disability.
§16-40-4. Confidentiality of the results of genetic testing.
(a) Except as otherwise provided in this article and in the
rules promulgated by the insurance commissioner, the results of
genetic testing are confidential and privileged and may be released
only to the individual tested and to persons specifically
authorized, in writing in accordance with section eight of this
article, by that individual to receive the results. This
information may only be discoverable or admissible in any
proceeding before a court, board or agency upon the entry of a
protective order entered by the circuit court in which the matter
is pending or by the circuit court for the county in which any
other proceeding is being conducted.
(b) When a biological sample is legally obtained by a
law-enforcement officer for use in a criminal investigation or
prosecution, information derived from DNA typing of that sample may
be disclosed for identification purposes to appropriate law-
enforcement authorities conducting the investigation or
prosecution, and the information may be used for identification
purposes during the course of the investigation or prosecution
without the consent of the person from whom the sample was obtained
and is admissible as evidence: Provided, That if the investigation or prosecution for which the genetic tests were performed does not
result in a conviction, then the court records regarding the DNA
information shall be expunged by the court within thirty days after
the final legal proceeding. The court shall notify the subject of
the information of the expungement of the records in writing:
Provided, however, That this requirement of expungement does not
extend to the records and databases maintained by the West Virginia
state police, and information from these records or databases may
not be considered to be a part of the court record for purposes of
this subsection.
(c) To assist law-enforcement officers in identifying deceased
persons, a biological sample from DNA typing, lawfully obtained by
a law-enforcement officer, may be used for identification purposes
only.
(d)
Notwithstanding any requirement to the contrary in this
article, the results of genetic testing may be disclosed for the
performance by or on behalf of an insurer of insurance functions
not otherwise specifically limited or prohibited by this article,
provided:
(1)The insurer obtains a written release from the individual
or the individual's legal representative to collect the
individual's genetic testing results; and
(2)The authorization provides notice that the results of
genetic testing may be subsequently disclosed by the insurer for the performance of insurance functions.
(e)Once the results of genetic testing are collected
pursuant to a release meeting the requirements of subsection (d) of
this section, the results may be disclosed for the performance of
insurance functions, not otherwise limited or prohibited by this
article, commencing the date the authorization is signed,
throughout the term of coverage of the policy, and for the duration
of any claim submitted under the policy, regardless of any
revocation or any limitation on the length of time during which the
authorization is valid with respect to the collection of the
information.
(f)The insurance commissioner shall promulgate rules in
accordance with chapter twenty-nine-a of this code to implement the
provisions of this subsection regarding the disclosure of the
results of genetic testing by an insurer for the performance of
insurance functions and the circumstances under which the identity
of the person from whom the results of genetic testing may not be
disclosed. The rules shall also include the form and contents of
the release that a person or his or her authorized representative
must execute prior to the collection of results of genetic testing,
which form must include notice that such results of genetic testing
may be used for insurance functions.
(g) Nothing in this article shall prohibit the use of genetic
test results that have been encrypted or coded to prevent the identification of the individual or that are used in health
research that is subject to the requirements of the United States
food and drug administration regulating the confidentiality of
persons participating in biomedical research.
§16-40-5. Use of results of
genetic testing for insurance
purposes.
(a) An insurer may not require that any person submit to
genetic testing or request the results of genetic testing for use
in connection with a policy of accident and sickness insurance,
excluding disability income and long-term care insurance.
(b) An insurer that receives the results of genetic testing
may not use the information for a nontherapeutic purpose in
connection with a policy of accident and sickness insurance,
excluding disability income and long-term care insurance. For the
purposes of this section, "nontherapeutic purposes" include, but
are not limited to, any attempt to:
(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.
(c) An insurer that possesses the results of genetic testing
may not release the results to a third party, except as otherwise
provided in this article.
(d) An insurer that receives the results of genetic testing in
connection with a disability income or long-term care insurance
policy may not use the results for a nontherapeutic purpose in
connection with an accident and sickness insurance policy that is
not a disability or long-term care insurance policy.
§16-40-6. Tests to determine inherited characteristics in
paternity proceedings.
Nothing in this article affects or restricts in any way the
ordering of or use of results from DNA typing or other tests to
determine inherited characteristics by a court in a judicial
proceeding to determine paternity brought under chapter forty-eight
of this code.
§16-40-7. Use of the results of genetic testing by employers.
(a) An employer may not:
(1) Request an employee or applicant for employment to submit
to genetic testing; or
(2) Request, as a condition of employment, that an employee or
applicant for employment release the results of genetic testing.
(b) An employer may not release the results of genetic testing
except in accordance with the provisions of section eight of this article.
§16-40-8. Disclosure of person tested and test results.
(a) Except as otherwise provided in this article or in rules
promulgated by the insurance commissioner, no person may disclose
or be compelled to disclose the identity of any person upon whom a
genetic test is performed or the results of genetic testing in a
manner that permits identification of the subject of the test,
except to the following persons:
(1) The subject of the test, the subject's legally authorized
representative, or a person specifically designated in a release
executed by the subject of the test or the subject's legally
authorized representative and which authorizes the release of the
specified test results;
(2) An agent or employee of a health facility or health care
provider if the health facility or health care provider itself is
authorized to obtain the testing results in accordance with
subdivision one of this subsection and the agent or employee
provides patient care and has a need to know the information in
order to conduct the tests or provide care or treatment;
(3) A health facility or health care provider that:
(A) Procures, processes, distributes or uses a human body part
from a deceased person with respect to medical information
regarding that person; or
(B) Possesses semen that was provided prior to the effective date of this article for the purpose of artificial insemination.
(b) All information and records held by a state agency or
local health authority pertaining to the results of genetic testing
are strictly confidential and are exempt from disclosure under the
provisions of chapter twenty-nine-b of this code. The information
and records may not be released or made public by the state agency
or local health authority and are not admissible as evidence nor
discoverable in any action of any kind in any court or before any
tribunal, board, agency or person, except under the following
circumstances:
(1) When made with the written consent of all persons to whom
the results pertain;
(2) When made for the sole purpose of implementing the
provisions of article twenty-two of this chapter; or
(3) When made in connection with a paternity proceeding under
chapter forty-eight of this code.
(c) Disclosure under subsection (b) of this section is limited
to those persons who have a need to obtain such information, and no
additional disclosures may be made.
§16-40-9. Disclosure by person to whom results have been
disclosed.
No person to whom the results of genetic testing have been
disclosed may disclose the results to another person, except as
otherwise provided in this article.
§16-40-10. Right of action.
Any person aggrieved by a violation of this article has a
right of action in the circuit court and may recover for each
violation:
(1) Against any person who negligently violates a provision of
this article, liquidated damages of one thousand dollars or actual
damages, whichever is greater;
(2) Against any person who intentionally or recklessly
violates a provision of this article, liquidated damages of five
thousand dollars or actual damages, whichever is greater;
(3) Reasonable attorney fees; and
(4) Other relief, including injunctive relief, as the court
may consider appropriate.
§16-40-11. Damages or other relief.
Nothing in this article limits the right of the subject of a
test to recover damages or other relief under any other applicable
law.
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