H. B. 2265


(By Delegates Martin, Hrutkay, Kuhn,
Fragale, R. Thompson and Caputo)
[Introduced January 15, 2003; referred to the
Committee on Health and Human Resources then 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 forty-two, relating to creating a genetic information privacy act; providing for the confidentiality of genetic information; prohibiting the use of genetic test information for certain insurance purposes; allowing the use of genetic test information in paternity proceedings; addressing the use of genetic test information by employers; prohibiting employers from using the results of genetic testing to deny applicants, employees and former employees certain benefits; specifying procedures for disclosure of genetic test information; and providing for a right of action and damages for violations.

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-two, 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 Act."
§16-42-2. Legislative findings; intent.
The Legislature finds that:
(1) The use of genetic testing can be valuable to an individual;
(2) 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; and
(3) The public health will be served by facilitating voluntary and confidential nondiscriminatory use of genetic testing information.
§16-42-3. Definitions.
As used in this article:
(1)(A) "Genetic testing" means a test of a person's genes, gene products or chromosomes for abnormalities or deficiencies, including carrier status, that:
(i) Are linked to physical or mental disorders or impairments;
(ii) Indicate a susceptibility to illness, disease, impairment or other disorders, whether physical or mental; or
(iii) Demonstrate genetic or chromosomal damage due to environmental factors;
(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; and
(iv) Tests for the presence of the human immunodeficiency virus;
(2) "Insurer" means:
(A) An entity that transacts an insurance business;
(B) A managed care plan; and
(3) (A) "Managed care plan" means a plan that establishes, operates or maintains a network of health care providers that have entered into agreements with the plan to provide health care services to enrollees where the plan has the ultimate and direct contractual obligation to the enrollee to arrange for the provision of or pay for services through:
(i) Organizational arrangements for ongoing quality assurance, utilization review programs or dispute resolution; or
(ii) Financial incentives for persons enrolled in the plan to use the participating providers and procedures covered by the plan;
(B) A managed care plan may be established or operated by any entity including a licensed insurance company, hospital or medical service plan, health maintenance organization, limited health service organization, preferred provider organization, third-party administrator or an employer or employee organization.
§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.
(d) Results of genetic testing that indicate that the individual tested is at the time of the test afflicted with a disease, whether or not currently symptomatic, are not subject to the confidentiality requirements of this article.
§16-42-5. 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 may consider the results of genetic testing in connection with a policy of accident and health insurance only if the individual voluntarily submits the results and the results are favorable to the individual.
(c) 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.
§16-42-6. 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.
§16-42-7. 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.
(c) An employer is specifically prohibited from using or considering the results of genetic testing information that may be obtained from an applicant, current employee or a former employee pursuant to the provisions of section eight of this article to deny an applicant, employee, former employee any right, benefit or opportunity, made available by the employer, to all other applicants, employees or former employees. An employer may not use the results of genetic testing in any proceeding in which an employer seeks to prevent an applicant, employee or former employee from receiving workers' compensation, unemployment compensation, retirement benefits, health care benefits or any other benefit the employee would otherwise enjoy as a result of his or her applicant, employment, and former employment status with that employer.
§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;
(5) Health facility staff committees for the purposes of conducting program monitoring, program evaluation or service reviews; and
(6) 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.
§16-42-9. 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.
§16-42-10. 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 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.
§16-42-11. 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. The bill also prohibits employers from using the results of genetic testing to deny benefits to applicants, employees or former employees and to prohibit employers from using the results of genetic testing in any proceeding in which an employer seeks to prevent an applicant, employee or former employee from receiving workers' compensation , unemployment compensation or any other benefit. Civil remedies are provided for violations of the article.

This article is new; therefore, strike-throughs and underscoring have been omitted.