CSSB 217(HES): "An Act relating to genetic privacy."
00 CS FOR SENATE BILL NO. 217(HES) 01 "An Act relating to genetic privacy." 02 BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF ALASKA: 03 * Section 1. The uncodified law of the State of Alaska is amended by adding a new section 04 to read: 05 LEGISLATIVE FINDINGS; PURPOSES. (a) The legislature finds that 06 (1) the deoxyribonucleic acid (DNA) molecule contains information about the 07 probable medical future of an individual and the individual's blood relatives; this information 08 is written in a code that is rapidly being deciphered; 09 (2) genetic information is uniquely private and personal information that 10 generally should not be collected, retained, or disclosed without the individual's authorization; 11 (3) the improper collection, retention, or disclosure of genetic information can 12 lead to significant harm to an individual and the individual's blood relatives, including 13 stigmatization and discrimination in areas such as employment, education, health care, and 14 insurance; 15 (4) an analysis of an individual's DNA provides information not only about
01 the individual, but also about blood relatives of the individual, with the potential for affecting 02 family privacy, including reproductive decisions; 03 (5) current legal protections for medical information, tissue samples, and DNA 04 samples are inadequate to protect genetic privacy and the individual's property interest in 05 these samples and the information derived from the samples; and 06 (6) laws for the collection, storage, and use of identifiable DNA samples and 07 private genetic information obtained from those samples are needed both to protect individual 08 and family privacy and to permit and encourage legitimate scientific and medical research. 09 (b) The purposes of this act are as follows: 10 (1) to define the rights of individuals whose genetic information is collected, 11 analyzed, retained, or disclosed and the individual's property right in that information; 12 (2) to define the circumstances under which an individual may be subjected to 13 genetic testing; and 14 (3) to define the circumstances under which an individual's genetic 15 information may be collected, analyzed, retained, or disclosed. 16 * Sec. 2. AS 18 is amended by adding a new chapter to read: 17 Chapter 13. Genetic Privacy. 18 Sec. 18.13.010. Genetic testing. (a) Except as provided in (b) of this section, 19 (1) a person may not collect a DNA sample from a person, perform a 20 DNA analysis on a sample, retain a DNA sample or the results of a DNA analysis, or 21 disclose the results of a DNA analysis unless the person has first obtained the 22 informed and written consent of the person, or the person's legal guardian or 23 authorized representative, for the collection, analysis, retention, or disclosure; 24 (2) a DNA sample and the results of a DNA analysis performed on the 25 sample are the exclusive property of the person sampled or analyzed. 26 (b) The prohibitions of (a) of this section do not apply to DNA samples 27 collected and analysis conducted 28 (1) under AS 44.41.035 or comparable provisions of another 29 jurisdiction; 30 (2) for a law enforcement purpose, including the identification of 31 perpetrators and the investigation of crimes and the identification of missing or
01 unidentified persons or deceased individuals; 02 (3) for determining paternity; 03 (4) to screen newborns as required by state or federal law; 04 (5) for the purpose of medical or scientific research and education, 05 including retention of genetic information and samples from anonymous donors if the 06 anonymous donor was informed at the time of collection of the sample that the sample 07 would be used for anonymous research and education and the donor consented to the 08 collection and use of the sample at that time; 09 (6) for the purpose of emergency medical treatment. 10 (c) A general authorization for the release of medical records or medical 11 information may not be construed as the informed and written consent required by this 12 section. The Department of Health and Social Services may by regulation adopt a 13 uniform informed and written consent form to assist persons in meeting the 14 requirements of this section. A person using that uniform informed and written 15 consent is exempt from civil or criminal liability for actions taken under the consent 16 form. A person may revoke or amend their informed and written consent at any time. 17 Sec. 18.13.020. Private right of action. A person may bring a civil action 18 against a person who collects a DNA sample from the person, performs a DNA 19 analysis on a sample, retains a DNA sample or the results of a DNA analysis or 20 discloses the results of a DNA analysis, in violation of this chapter. In addition to the 21 actual damages suffered by the person, a person violating this chapter shall be liable to 22 the person for damages in the amount of $5,000 or, if the violation resulted in profit or 23 monetary gain to the violator, $100,000. 24 Sec. 18.13.030. Criminal penalty. (a) A person commits the crime of 25 unlawful DNA collection, analysis, retention, or disclosure if the person knowingly 26 collects a DNA sample from a person, performs a DNA analysis on a sample, retains a 27 DNA sample or the results of a DNA analysis, or discloses the results of a DNA 28 analysis in violation of this chapter. 29 (b) In this section, "knowingly" has the meaning given in AS 11.81.900. 30 (c) Unlawful DNA collection, analysis, retention, or disclosure is a class A 31 misdemeanor.
01 Sec. 18.13.100. Definitions. In this chapter, 02 (1) "DNA" means deoxyribonucleic acid, including mitochondrial 03 DNA, complementary DNA and DNA derived from ribonucleic acid; 04 (2) "DNA analysis" means DNA or genetic typing and testing or any 05 test for determining the presence or absence of genetic characteristics in an individual, 06 including tests of nucleic acids, chromosomes, or proteins in order to diagnose or 07 identify a genetic characteristic; 08 (3) "genetic characteristic" includes a gene, chromosome, or alteration 09 of a gene or chromosome that may be tested to determine the existence or risk of a 10 disease, disorder, trait, propensity, or syndrome, or to identify an individual or a blood 11 relative; "genetic characteristic" does not include family history or a genetically 12 transmitted characteristic whose existence or identity is determined other than through 13 a genetic test. 14 * Sec. 3. The uncodified law of the State of Alaska is amended by adding a new section to 15 read: 16 APPLICABILITY. AS 18.13, enacted by sec. 2 of this Act, applies to any collection, 17 analysis, retention, or disclosure occurring after the effective date of this Act.