HB 1290 - AS INTRODUCED
2001 SESSION
09/01
HOUSE BILL 1290
This bill establishes that an individual's genetic information and DNA sample are the property of the individual. The bill creates certain procedures for the retention, destruction, and use of genetic information and DNA samples.
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
Explanation: Matter added to current law appears in bold italics.
Matter removed from current law appears [in brackets and struckthrough.]
Matter which is either (a) all new or (b) repealed and reenacted appears in regular type.
01-2078
09/01
STATE OF NEW HAMPSHIRE
In the Year of Our Lord Two Thousand One
AN ACT relative to genetic information.
Be it Enacted by the Senate and House of Representatives in General Court convened:
1 Legislative Findings; Purposes.
I. The general court finds that:
(a) The DNA molecule contains information about an individual's probable medical future. This information is written in a code that is rapidly being broken.
(b) Genetic information is uniquely private and personal information that generally should not be collected, retained, or disclosed without the individual's authorization.
(c) The improper collection, retention, or disclosure of genetic information can lead to significant harm to the individual, including stigmatization and discrimination in areas such as employment, education, health care, and insurance.
(d) An analysis of an individual's DNA provides information not only about an individual, but also about blood relatives of the individual, with the potential for impacting family privacy, including reproductive decisions.
(e) Current legal protections for medical information, tissue samples, and DNA samples are inadequate to protect genetic privacy.
(f) Laws for the collection, storage and use of identifiable DNA samples and private genetic information obtained from those samples are needed both to protect individual privacy and to permit legitimate scientific and medical research.
II. The purposes of RSA 141-H relating to genetic characteristics, information, and testing are as follows:
(a) To define the rights of individuals whose genetic information is collected, retained, or disclosed.
(b) To define the circumstances under which an individual may be subjected to genetic testing.
(c) To define the circumstances under which an individual's genetic information may be collected, retained, or disclosed.
2 New Section; Individual's Rights in Genetic Information; Retention of Information; Destruction of Information. Amend RSA 141-H by inserting after section 5 the following new section:
141-H:5-a Individual's Rights in Genetic Information; Retention and Destruction of Information.
I. In this section:
(a) "Anonymous research" means scientific or medical research conducted in such a manner that the identity of a person who has provided a sample, or the identity of a person from whom genetic information has been obtained, cannot be determined.
(b) "DNA" means deoxyribonucleic acid.
(c) "DNA sample" means any human biological specimen from which DNA was extracted, or any human biological specimen that is obtained or retained for the purpose of extracting and analyzing DNA to determine a genetic characteristic. "DNA sample" includes DNA extracted from the specimen.
(d) "Genetic characteristic" means any gene or chromosome, or alteration thereof, that is scientifically or medically believed to cause a disease, disorder, or syndrome, or to be associated with statistically increased risk of development of a disease, disorder, or syndrome.
(e) "Genetic information" is the information about an individual or family obtained from:
(1) A genetic test; or
(2) An individual's DNA sample.
(f) "Genetic test" means a test for determining the presence or absence of genetic characteristics in an individual, including tests of nucleic acids such as DNA, RNA and mitochondrial DNA, chromosomes or proteins in order to diagnose a genetic characteristic.
II. An individual's genetic information and DNA sample are the property of the individual.
III. The DNA sample of an individual from which genetic information has been obtained shall be destroyed promptly upon the specific request of that individual or the individual's representative, unless:
(a) Retention is authorized pursuant to criminal law relating to identification of persons, or is necessary for the purpose of a criminal or death investigation, a criminal or juvenile proceeding, an inquest or a child fatality review by a multidisciplinary child abuse team;
(b) Retention is authorized by specific court order pursuant to rules adopted by the chief justice of the supreme court for civil actions; or
(c) Retention is for anonymous research and the individual consented to such anonymous research under RSA 141-H:2.
IV. A DNA sample from an individual that is the subject of a research project, including an anonymous research project, shall be destroyed promptly upon completion of the project or withdrawal of the individual from the project, whichever occurs first, unless the individual or the individual's representative directs otherwise by informed consent.
V. A DNA sample from an individual for insurance or employment purposes shall be destroyed promptly after the purpose for which the sample was obtained has been accomplished, unless retention is authorized by specific court order pursuant to rules adopted by the chief justice of the supreme court for civil, criminal and juvenile proceedings.
VI. An individual or an individual's representative, promptly upon request, may inspect, request correction of and obtain genetic information from the records of the individual, unless the genetic information has been made anonymous by destruction of all information that could allow disclosure of the identity of the individual who provided the sample.
VII. The department of health and human services shall coordinate the implementation of this section.
VIII. This section applies only to genetic information that can be identified as belonging to an individual or family. This section does not apply to any law, contract or other arrangement that determines a person's rights to compensation relating to substances or information derived from an individual's DNA sample.
3 Effective Date. This act shall take effect January 1, 2003.