N.Y. Insurance Law § 2615: Genetic testing written informed consent

§ 2615. Genetic testing written informed consent. (a) No authorized

insurer or person acting on behalf of an authorized insurer shall

request or require an individual proposed for insurance coverage to be

the subject of a genetic test without receiving the written informed

consent of such individual prior to such testing, in advance of the

test.

(b) Written informed consent to a genetic test shall consist of

written authorization that is dated and signed and includes at least the

following:

(1) a general description of the test;

(2) a statement of the purpose of the test;

(3) a statement that a positive test result is an indication that the

individual may be predisposed to or have the specific disease or

condition tested for and may wish to consider further independent

testing, consult their physician or pursue genetic counseling;

(4) a general description of each specific disease or condition tested

for;

(5) the level of certainty that a positive test result for that

disease or condition serves as a predictor of such disease. If no level

of certainty has been established, this subparagraph may be disregarded;

(6) the name of the person or categories of persons or organizations

to whom the test results may be disclosed;

(7) a statement that no tests other than those authorized shall be

performed on the biological sample and that the sample shall be

destroyed at the end of the testing process or not more than sixty days

after the sample was taken; and

(8) the signature of the individual subject of the test or, if that

individual lacks the capacity to consent, the signature of the person

authorized to consent for such individual.

(c) A general waiver, wherein consent is secured for genetic testing

without compliance with subsection (b) of this section, shall not

constitute informed consent.

(d) Any further disclosure of genetic test results to persons or

organizations not named on the informed consent requires the further

informed consent of the subject of the test.

(e) In the event that an insurer's adverse underwriting decision is

based in whole or in part on the results of a genetic test, the

authorized insurer shall notify the individual of the adverse

underwriting decision and ask the individual to elect in writing, unless

the individual has already done so, whether to have the specific test

results disclosed directly to the individual or to the individual's

physician, at the discretion of the individual.

(f) All records, findings and results of any genetic test performed on

any person shall be deemed confidential and may not be disclosed without

the written authorization as described in subsection (g) of this section

of the person to whom such genetic test relates. This information may

not be released to any person or organization not specifically

authorized by the individual subject of the test. Unauthorized

solicitation or possession of such information shall be unlawful, except

for the unintentional possession of such information as part of a health

record created prior to the date on which this section shall have become

a law and provided no action adverse to the interests of the subject are

taken as a result of such possession.

(g) Written authorization to records, findings and/or results of

genetic tests that have been performed prior to the effective date of

this section, or which was done after the individual had given written

informed consent pursuant to this section shall consist of a statement

which specifically requests genetic test records, findings and/or

results, the person or organizations to whom the records, findings

and/or results shall be disclosed, the signature of the individual

subject of the records, findings and/or results of the test or, if that

person lacks the capacity to consent, the signature of the person

authorized to consent for the subject.

(h) No authorized insurer who lawfully possesses information derived

from a genetic test on a biological sample from an individual shall

incorporate such information into the records of a non-consenting

individual who may be genetically related to the tested individual; nor

shall any inferences be drawn, used, or communicated regarding the

possible genetic status of the non-consenting individual.

(i) For the purposes of this section, the term "adverse underwriting

decision" shall have the same meaning as defined in section twenty-six

hundred eleven of this article and the term "genetic test" shall have

the same meaning as defined in section seventy-nine-l of the civil

rights law.

(j) If the superintendent determines after notice and a hearing that

an authorized insurer or a person acting on behalf of an authorized

insurer has violated this section, then the superintendent shall levy a

fine up to five thousand dollars. Also, any authorized insurer or person

acting on behalf of an authorized insurer who violates the provisions of

this section shall be subject to the provisions of article twenty-four

of this chapter. Violations of this section shall also be subject to the

provisions of section one hundred nine of this chapter, except paragraph

one of subsection (c) of such section.