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This entry was published on 2014-09-22
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SECTION 2615
Genetic testing written informed consent
Insurance (ISC) CHAPTER 28, ARTICLE 26
§ 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.