The consent document for obtaining genetic information of a
person must be in substantially the following form:
As used in this document, "genetic information" means any
information that is obtained from a genetic test.
1. I understand that no insurer or
corporation that provides health insurance, carrier serving small employers or
health maintenance organization may:
(a)
Require me or any member of my family to take a genetic test;
(b) Require me to disclose whether I or any
member of my family has taken a genetic test;
(c) Request my genetic information or the
genetic information of a member of my family; or
(d) Determine the rates or any other aspect
of the coverage or benefits for health care for me or my family based on
whether I or any member of my family has taken a genetic test or based on my
genetic information or the genetic information of any member of my
family.
2. I also
understand that:
(a) I have the right to
receive the results of a genetic test, in writing, within 10 working days after
the person conducting the test has received the results. The written results
must indicate that, except as otherwise provided in chapter 629 of NRS, my
genetic information may not be obtained, retained or disclosed without first
obtaining my informed consent.
(b)
It is unlawful for a person or entity to obtain my genetic information without
my informed consent, unless the information is obtained:
(1) By a federal, state, county or city law
enforcement agency to establish the identity of a person or a dead human
body;
(2) To determine the
parentage or identity of a person in certain circumstances;
(3) To determine the paternity of a person in
certain circumstances;
(4) For use
in a study where the identities of the persons from whom the genetic
information is obtained are not disclosed to the person conducting the
study;
(5) To determine the
presence of certain inheritable disorders in an infant in certain
circumstances; or
(6) Pursuant to
an order of a court of competent jurisdiction.
(c) It is unlawful for a person to retain
genetic information that identifies me without first obtaining my informed
consent, unless retention of the genetic information is:
(1) Necessary to conduct a criminal
investigation, an investigation concerning the death of a person or a criminal
or juvenile proceeding;
(2)
Authorized pursuant to an order of a court of competent jurisdiction;
or
(3) Necessary for certain
medical facilities to maintain my medical records.
(d) If I have authorized a person to retain
my genetic information, I may request that the person destroy the genetic
information. Such a person shall destroy the information, unless retention of
the information is:
(1) Necessary to conduct a
criminal investigation, an investigation concerning the death of a person or a
criminal or juvenile proceeding;
(2) Authorized by an order of a court of
competent jurisdiction;
(3)
Necessary for certain medical facilities to maintain my medical records;
or
(4) Authorized or required by
state or federal law.
(e) Except as otherwise provided by federal
law or regulation, a person who obtains my genetic information for use in a
study shall destroy the information upon completion of the study or my
withdrawal from the study, whichever occurs first, unless I authorize the
person conducting the study to retain my genetic information after the study is
completed or upon my withdrawal from the study.
(f) It is unlawful for a person to disclose
or to compel another person to disclose my identity if I was the subject of a
genetic test or to disclose to another person genetic information that allows
the other person to identify me without first obtaining my informed consent,
unless the information is disclosed:
(1) To
conduct a criminal investigation, an investigation concerning the death of a
person or a criminal or juvenile proceeding;
(2) To determine the parentage or identity of
a person in certain circumstances;
(3) To determine the paternity of a person in
certain circumstances;
(4) Pursuant
to an order of a court of competent jurisdiction;
(5) By a physician after I am deceased and my
genetic information will assist in the medical diagnosis of persons related to
me by blood;
(6) To a federal,
state, county or city law enforcement agency to establish the identity of a
person or dead human body;
(7) To
determine the presence of certain inheritable preventable disorders in an
infant in certain circumstances; or
(8) By an agency of criminal justice in
certain circumstances.
I, ........ (name of person giving consent), hereby
give my consent to ........ (name of person or agency obtaining genetic
information) to obtain my genetic information; or
I, ........ (name of person giving consent), hereby give my
consent to ........ (name of person or agency retaining genetic information) to
retain my genetic information; or
I, ........ (name of person giving consent), hereby give my
consent to ........ (name of person or agency disclosing genetic information)
to disclose my genetic information to ........ (name and address of person or
agency to receive genetic information).
This consent document is valid until ..... (date of
expiration).
If the person tested is unable to sign, please indicate the
reason here: .............................
.........................................................................................................................................
...............................................................
...............................................................
Signature of consenting person Witness
or his or her legal representative
...............................................................
...............................................................
Date Date
Added to NAC by Bd. of
Health by R018-98, eff. 11-24-98