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Introduced Version House Bill 2720 History

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hb2720 intr
H. B. 2720


(By Delegates Hatfield, Fleischauer, Guthrie,
Brown, Spencer, Perdue, Martin and Eldridge)
[Introduced February 20, 2009; referred to the
Committee on Health and Human Resources then the Judiciary.]



A BILL to amend the Code of West Virginia, 1931, as amended, by adding thereto a new article, designated §16-44-1, §16-44-2 , §16-44-3 , §16-44-4 , §16-44-5 , §16-44-6 , §16-44-7 , §16-44-8 , §16-44-9 , §16-44-10 and §16-44-1 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 §16-44-1, §16-44-2
, §16-44-3 , §16-44-4 , §16-44-5 , §16-44-6 , §16-44-7 , §16-44-8 , §16-44-9 , §16-44-10 and §16-44-1 1 , all to read as follows:
ARTICLE 44. GENETIC INFORMATION PRIVACY ACT.
§16-44-1. Short title.
This article may be cited as the "Genetic Information Privacy Act."

§16-44-2. 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 information; and
(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.
§16-44-3. 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 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 individual's characteristics.
(7) (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), 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 information.
(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 obtained:
(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.
§16-44-4. 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 database 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 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.
(e) The provisions of this article do 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.
§16-44-5. 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. 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 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.
(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.
§16-44-6. 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 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.
§16-44-7. 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.
§16-44-8. 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 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.
§16-44-9. 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.
§16-44-10. 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 $1,000 or actual damages, whichever is greater;
(2) Against any person who intentionally or recklessly violates a provision of this article, liquidated damages of $5,000 or actual damages, whichever is greater;
(3) Reasonable attorney fees; and
(4) Other relief, including an injunction, as the court may consider appropriate.
§16-44-11. 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.

Strike-throughs indicate language that would be stricken from the present law, and underscoring indicates new language that would be added.
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