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Engrossed Version Senate Bill 218 History

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Key: Green = existing Code. Red = new code to be enacted


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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