H. B. 2376
(By Delegates Hatfield, Perdue, Webster,
Brown and Rick Thompson)
[Introduced February 16, 2005; referred to the
Committee on Health and Human Resources then the
A BILL to amend the code of West Virginia, 1931, as amended, by
adding thereto a new article, designated §16-42-1, §16-42-2
1, all relating to creating a
genetic information privacy act; establishing legislative
findings regarding genetic privacy; defining terms; providing
for the confidentiality of genetic information; prohibiting
the use of genetic test information for certain insurance
purposes; authorizing the Insurance Commissioner to promulgate
rules consistent with federal guidelines regarding disclosures
of information; allowing the use of genetic test information
in paternity proceedings; allowing use of genetic DNA typing
information by law-enforcement officers in certain
circumstances; establishing certain limitations on the use of
genetic test information by employers; specifying procedures
for disclosure of genetic test information; providing for an exception to this article for those participating in research
settings governed by the federal policy for the protection of
human research subjects; and providing for a right of action
and damages for violations.
Be it enacted by the Legislature of West Virginia:
That the code of West Virginia, 1931, as amended, be amended
by adding thereto a new article, designated §16-42-1, §16-42-2
, all to read as follows:
ARTICLE 42. GENETIC INFORMATION PRIVACY ACT.
§16-42-1. Short title.
This article may be cited as the "Genetic Information Privacy
§16-42-2. Legislative findings; intent.
The Legislature finds that:
(1) To effectively protect genetic privacy, unauthorized
collection and analysis of individually identifiable DNA and other
genetic information must be prohibited so that persons giving these
samples are assured that the genetic information is not misused;
(2) The use of genetic testing is a valuable tool for the
diagnosis of health problems and individuals should be encouraged
to submit to genetic tests;
(3) Despite existing laws, rules and professional standards
which require or promote voluntary and confidential use of genetic testing information, many members of the public are deterred from
seeking genetic testing because of fear that test results will be
disclosed without consent or be used in a discriminatory manner;
(4) The public health will be served by facilitating voluntary
and confidential nondiscriminatory use of genetic testing
(5) The public health will be further served by exempting from
the provisions of this article those participating in research
settings governed by the federal policy for the protection of human
research subjects, including tests conducted purely for research
and tests for somatic, as opposed to heritable, mutations.
As used in this article:
(1) "Carrier" means a person who carries one copy of a mutant
gene for a recessively inherited genetic disease and does not
develop the disease but may or may not pass the gene for the
disease on to his or her children.
(2) "Chromosomes" means rod-like structures in the cell's
nucleus that contain DNA, some of which serve as genes.
(3) "DNA" means deoxyribonucleic acid, which is a molecule
containing hereditary information that is passed on from one
generation to the next.
(4) "DNA database" means a collection of DNA typing profiles
of selected or randomly chosen individuals.
(5) "DNA typing" means a scientifically reliable method for
characterizing and comparing sequences of DNA to determine if the
DNA sequences match.
(6) "Genes" means basic units of heredity that are found in
living cells, which are stretches of DNA that determine an
(7) (A) "Genetic testing" means a test of a person's genes or
chromosomes to determine inherent properties or to identify genetic
(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: Provided, That the results derived from testing conducted
pursuant to paragraph (B), subparagraphs (i) through (iv) may not
be used for purposes of genetic testing without the express written
permission of the person being tested;
(v) Tests for law-enforcement identification purposes,
including those performed in accordance with article two-b, chapter
fifteen of this code;
(vi) Research governed by the federal policy for the
protection of human research subject, also known as the "common rule," tests conducted purely for research and tests for somatic as
opposed to heritable, mutations;
(vii) Tests where direct personal identifiers that reveal the
patient's identity are encoded or encrypted; and
(viii) Tests that are composed of de-identified or anonymized
(8) "Insurer" means an insurance company, insurance service or
health maintenance organization licensed to engage in the business
of insurance in this State subject to the provisions of chapter
thirty-three of this code.
(9) "Private genetic information" means any information about
an identifiable individual that is derived from the presence,
absence, alteration or mutation of a gene or genes, or the presence
or absence of a specific DNA marker or markers and which has been
(A) From an analysis of the individual's DNA; or
(B) From an analysis of the DNA of a person to whom the
individual is related.
§16-42-4. Confidentiality of genetic information.
(a) Except as otherwise provided in this article, genetic
testing and information derived from genetic testing is
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 information. Except as otherwise
provided in subsection (b) of this section and in section eight of
this article, this information is not admissible as evidence, nor
discoverable in any action of any kind in any court, or before any
tribunal, board, agency or person. No liability attaches to any
hospital, physician or other health care provider for compliance
with the provisions of this article including a specific written
release by the individual in accordance with this article.
(b) When a biological sample is legally obtained by a
law-enforcement officer for use in a criminal investigation or
prosecution, information derived from genetic testing of that
sample may be disclosed for identification purposes to appropriate
law-enforcement authorities conducting the investigation or
prosecution. The information may be used for identification
purposes during the course of the investigation or prosecution with
respect to the individual tested without the consent of the
individual and is admissible as evidence in court. The information
is confidential and may be disclosed only for purposes of criminal
investigation or prosecution.
(c) If the subject of the information requested by law
enforcement is found innocent of the offense or otherwise not
criminally penalized, then the court records 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. The Legislature does not
intend for this requirement to extend to the data base of
information maintained by the West Virginia State Police and such
intent may be implied. Information from this data base may not be
considered to be a part of the court record for purposes of this
(d) 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
(e) The provisions of this article shall not apply to those
persons participating in research settings governed by the federal
policy for the protection of human research subjects, also known as
the "common rule," tests conducted purely for research or tests for
somatic, as opposed to heritable, mutations.
§16-42-5. Use of genetic testing information for insurance
(a) An insurer may not request or seek information derived
from genetic testing for use in connection with a policy of
accident and health insurance. Except as provided in subsection
(b) of this section, an insurer that receives information derived
from genetic testing may not use the information for a
nontherapeutic purpose as it relates to a policy of accident and
health insurance. Nontherapeutic purposes include, but are not limited to:
(1) Activities relating to eligibility for enrolling in, or
amendment, delivery, issuance or renewal of, or claims for or
denial of coverage under a plan; and
(2) Requiring the release of the results of a genetic test as
condition precedent to the payment for the tests or for any other
(b) An insurer that possesses information derived from genetic
testing may not release the information to a third party, except as
specified in section eight of this article.
(c) At such time as guidelines are promulgated by an
appropriate agency, committee or other entity of the federal
government, the Insurance Commissioner shall propose rules for
legislative approval in accordance with the provisions of article
three, chapter twenty-nine-a of this code to authorize any further
disclosures of information derived from genetic testing for
insurance purposes. The rules shall be consistent with applicable
federal guidelines regarding such disclosures.
§16-42-6. Tests to determine inherited characteristics in
Nothing in this article affects or restricts in any way the
ordering of or use of results from deoxyribonucleic acid (DNA)
testing or other tests to determine inherited characteristics by
the court in a judicial proceeding to determine paternity brought under chapter forty-eight-a of this code.
§16-42-7. Use of genetic testing information by employers.
(a) An employer shall treat genetic testing information in a
manner that is consistent with the requirements of federal law,
including, but not limited to, the Americans with Disabilities Act.
(b) An employer may release genetic testing information only
in accordance with section eight of this article.
§16-42-8. Disclosure of person tested and test results.
(a) 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 a genetic test in a manner that permits identification
of the subject of the test, except to the following persons:
(1) The subject of the test or the subject's legally
authorized representative. This subdivision does not create a duty
or obligation under which a health care provider is required to
notify the subject's spouse or legal guardian of the test results,
and no such duty or obligation is implied. No civil liability or
criminal sanction under this article may be imposed for any
disclosure or nondisclosure of a test result to a spouse by a
physician acting in good faith under this paragraph. For the
purpose of any proceedings, civil or criminal, the good faith of
any physician acting under this paragraph shall be presumed;
(2) Any person specifically designated in a written legally
effective release that authorizes the release of the specified test results executed by the subject of the test or the subject's
legally authorized representative;
(3) An authorized 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 test results, the agent or
employee provides patient care and the agent or employee has a need
to know the information in order to conduct the tests or provide
care or treatment;
(4) A health facility or health care provider that procures,
processes, distributes or uses:
(A) A human body part from a deceased person with respect to
medical information regarding that person; or
(B) Semen provided prior to the effective date of this article
for the purpose of artificial insemination; and
(5) In the case of a minor under eighteen years of age, the
health care provider who ordered the test shall make a reasonable
effort to notify the minor's parent or legal guardian if, in the
professional judgment of the health care provider, notification
would be in the best interest of the minor and the health care
provider has first sought unsuccessfully to persuade the minor to
notify the parent or legal guardian or after a reasonable time
after the minor has agreed to notify the parent or legal guardian,
the health care provider has reason to believe that the minor has
not made the notification. This subdivision does not create a duty or obligation under which a health care provider is required to
notify the minor's parent or legal guardian of the test results,
nor is a duty or obligation implied. No civil liability or
criminal sanction under this article may be imposed for any
notification or nonnotification of a minor's test result by a
health care provider acting in good faith under this subdivision.
For the purpose of any proceeding, civil or criminal, the good
faith of any health care provider acting under this subdivision
shall be presumed.
(b) All information and records held by a state agency or
local health authority pertaining to genetic information is
strictly confidential and exempt from copying and inspection under
the provisions of chapter twenty-nine-b. 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
(1) When made with the written consent of all persons to whom
the information pertains;
(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 who have a need to know the information, and no additional
disclosures may be made.
§16-42-9. Disclosure by person to whom results have been
No person to whom the results of a test have been disclosed
may disclose the test results to another person, except as
authorized by section eight of this article.
§16-42-10. 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
(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 an injunction, as the court may
§16-42-11. 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.
NOTE: The purpose of this bill is to provide for the
confidentiality of genetic test results and to limit the use of
genetic information by health insurers. This bill is based on
suggested legislation published by the Council of State
This article is new; therefore, strike-throughs and
underscoring have been omitted.