Senate Bill No. 218
(By Senators Redd, Burnette, Caldwell, Hunter, Minard, Rowe,
Snyder, Wooton
, Facemyer and Mitchell)
____________
[Introduced January 15, 2002; referred to the Committee on the
Judiciary.]
____________
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 thirty-eight,
relating to creating a genetic information privacy act;
setting forth short title; establishing legislative
findings and intent; defining terms; providing for
confidentiality of genetic information; providing for use
of genetic information for insurance purposes; clarifying
effect of article on paternity proceedings; restricting use
of genetic information by employers; providing for
disclosure of person tested and test results; establishing
cause of action for violation of article; and clarifying
effect of article on 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 thirty-eight,
to read as follows:
ARTICLE 38. GENETIC INFORMATION PRIVACY ACT.
§16-38-1. Short title.
This article may be cited as the "Genetic Information
Privacy Act".
§16-38-2. 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
that 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; and
(4) The public health will be served by facilitating
voluntary and confidential nondiscriminatory use of genetic
testing information.
§16-38-3. Definitions.
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 typing" means a scientifically reliable method for
characterizing and comparing sequences of DNA to determine if
the DNA sequences match.
(5) "Genes" means basic units of heredity that are found in
living cells which are stretches of DNA that determine an
individual's characteristics.
(6)(A) "Genetic testing" means a test of a person's genes or chromosomes to determine inherent properties or to identify
genetic abnormalities.
(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), subdivisions (i) through
(iv), inclusive, may not be used for purposes of genetic testing
without the express written permission of the person being
tested; and
(v) Tests for law-enforcement identification purposes.
(7) "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.
§16-38-4. Confidentiality of genetic information.
(a) Except as otherwise provided in this article, genetic
testing and information derived therefrom 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 DNA typing 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 person tested without the consent of the
person 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 no 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 subsection.
(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 only.
§16-38-5. Use of genetic testing information for insurance
purposes.
(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. 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 purpose.
(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.
§16-38-6. 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 the court in a judicial
proceeding to determine paternity brought under chapter
forty-eight of this code.
§16-38-7. 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.
§16-38-8. 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 executed by the subject of the test or the
subject's legally authorized representative that authorizes the
release of the specified test results;
(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; or
(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.
(b) All information and records held by a state agency or
local health authority pertaining to private genetic information
is strictly confidential and exempt from copying and inspection
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 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.
§16-38-9. Disclosure by person to whom results have been
disclosed.
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.
§16-38-10. 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 an injunction, as the court may
consider appropriate.
§16-38-11. 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
governments.
This bill has been recommended for introduction and passage
this session by the Joint Standing Committee on the Judiciary.
This article is new; therefore, strike-throughs and
underscoring have been omitted.)