A. This section shall be known and may be cited as the "Genetic
Research Studies Nondisclosure Act".
B. For purposes of the Genetic Research Studies Nondisclosure Act,
"genetic research study or studies" shall mean those genetic research
studies approved by an institutional review board as defined in 21
CFR, Section 50 or conducted subject to the requirements of the
federal common rule at 21 CFR, Section 50 and Section 56, and 45 CFR,
C. All research records of individual subjects in genetic research
studies shall be confidential, meaning the records shall not be
subject to subpoena or discovery in civil suits, except in cases where
the information in the records is the basis of the suit. The records
shall not be disclosed to employers or health insurers without the
informed consent of the subject.
D. Notwithstanding any language in this section to the contrary, this
section shall not apply to an insurer or to an individual or third
party dealing with an insurer in the ordinary course of underwriting,
conducting or administering the business of life, disability income or
long-term care insurance or in connection with any judicial,
legislative or administrative proceeding relating to life, disability
income or long-term care insurance. Nothing in this section is
intended to govern an insurer or to govern an individual or third
party dealing with an insurer in connection with the obtaining,
maintaining, use, disclosure or redisclosure of genetic information or
the results of a genetic test, including but not limited to records of
individual subjects in genetic research in connection with life,
disability income or long-term care insurance or in connection with
any judicial, legislative or administrative proceeding relating to
life, disability income or long-term care insurance.
E. All stored tissues, including blood, that arise from surgery, other
diagnostic or therapeutic steps, or autopsy may be disclosed for
genetic or other research studies if informed consent has been
obtained. Informed consent may be included in a section of the consent
for treatment, admission to a hospital or clinic, or permission for an
autopsy and no other consent shall be required.
F. It shall be permissible to publish or otherwise use the results of
genetic research studies for research or educational purposes if no
individual subject is identified. If specific informed consent from
the individual has been obtained, the individual may be identified.