SENATE BILL NO. 66 January 28, 1997, Introduced by Senators A. SMITH and BYRUM and referred to the Committee on Financial Services. A bill to regulate access to genetic information about individuals. THE PEOPLE OF THE STATE OF MICHIGAN ENACT: 1 Sec. 1. This act shall be known and may be cited as the 2 "genetic information privacy act". 3 Sec. 2. As used in this act: 4 (a) "DNA sample" means a deoxyribonucleic acid specimen 5 taken from an individual. 6 (b) "Genetic information" means data derived from an indi- 7 vidual or member of the individual's family about the 8 individual's genes, gene products, or inherited characteristics. 9 (c) "Genetic test" means a procedure for determining the 10 presence or absence of an inherited genetic characteristic in an 11 individual, and includes but is not limited to a test of 12 chromosomes, proteins, or nucleic acids such as DNA, RNA, or 00629'97 DMS 2 1 mitochondrial DNA to identify a predisposing genetic 2 characteristic. 3 (d) "Individual" means a natural person. 4 (e) "Person" means an individual, partnership, corporation, 5 association, governmental entity, or other legal entity. 6 (f) "RNA" means nucleic acids that contain ribose and uracil 7 as structural components and are associated with the control of 8 cellular chemical activities. 9 Sec. 3. (1) A person shall not perform a genetic test upon 10 an individual unless the person provides the individual with 11 written notice that contains a specific description of the test 12 to be performed and includes a statement that identifies all of 13 the following: 14 (a) The purpose of the test. 15 (b) The potential uses of the test. 16 (c) The limitations of the test. 17 (d) The meaning of any results of the test. 18 (e) The procedures for providing the individual with notice 19 of the test results. 20 (f) The rights of the individual to keep the test results 21 confidential, subject to the exceptions specified in this act. 22 (2) A person who performs a genetic test performed upon an 23 individual or who receives the results of a genetic test per- 24 formed upon that individual shall provide the individual with a 25 statement specifying that the test was performed or that the test 26 results were received. The statement shall include a notice that 27 genetic information derived from the test may not be disclosed to 00629'97 3 1 persons other than the individual without the individual's 2 written consent, unless the disclosure is made in accordance with 3 an exception specified in this act. 4 (3) This subsection does not apply to an individual who 5 orders a genetic test or receives the results of a genetic test 6 performed on himself or herself. 7 (4) A person who violates this section is guilty of a misde- 8 meanor punishable by a fine of $1,000.00 or imprisonment for not 9 more than 6 months, or both. 10 Sec. 4. (1) Genetic information about an individual is the 11 property of the individual. A person other than the individual 12 shall not obtain the individual's genetic information without the 13 express written consent of the individual unless the genetic 14 information is required for 1 or more of the following purposes: 15 (a) To establish the identity of an individual by a law 16 enforcement agency engaged in a criminal investigation, or by a 17 court in a juvenile or criminal adjudication or proceeding. 18 (b) To establish the identity of an individual if the acqui- 19 sition of the genetic information is authorized by federal or 20 state law. 21 (c) To comply with newborn screening requirements estab- 22 lished by federal or state law. 23 (d) To determine paternity in accordance with the paternity 24 act, 1956 PA 205, MCL 722.711 to 722.730. 25 (e) To determine the identity of a deceased individual. 26 (f) To conduct research in which the identity of the 27 individual remains anonymous. 00629'97 4 1 (2) A person who violates this section is guilty of a 2 misdemeanor punishable by a fine of $1,000.00 or imprisonment for 3 not more than 6 months, or both. 4 Sec. 5. (1) A person who obtains possession of an 5 individual's genetic information shall not retain that genetic 6 information without the express written consent of the individu- 7 al, unless the retention is required to achieve 1 or more of the 8 purposes described in section 4. The person shall not retain the 9 genetic information after a purpose described in section 4 is 10 achieved unless the individual about whom the genetic information 11 relates expressly consents in writing to the retention. 12 (2) A DNA sample shall be destroyed promptly after per- 13 formance of the genetic test for which the sample was taken, 14 unless 1 of the following conditions is met: 15 (a) Retention is required for an ongoing criminal investiga- 16 tion, or for a criminal or juvenile adjudication or proceeding. 17 (b) Retention is authorized by a court having jurisdiction. 18 (3) An individual's DNA sample provided for a research 19 project shall be destroyed immediately after completion of the 20 project or upon withdrawal of the individual from the project, 21 whichever occurs first. However, this subsection does not apply 22 if the individual or his or her representative expressly consents 23 to retention of the sample after receiving explicit information 24 about the purpose of that retention. 25 (4) An individual's DNA sample provided for an insurance or 26 employment purpose shall be destroyed immediately after that 00629'97 5 1 purpose is met, unless the destruction is prohibited by a court 2 order. 3 (5) A person who violates this section is guilty of a misde- 4 meanor punishable by a fine of $1,000.00 or imprisonment for not 5 more than 6 months, or both. 6 Sec. 6. An individual or his or her representative may, 7 within 10 days after making a written request, inspect, request 8 correction of, or obtain a copy of a record of genetic informa- 9 tion about the individual. If a copy of a record is requested, 10 the individual or his or her representative may be charged the 11 actual cost of copying the record. 12 Sec. 7. This act applies only to genetic information that 13 can be identified as belonging to an individual or family. This 14 act does not affect any law, contract, or other arrangement that 15 determines a person's right to compensation for substances or 16 data derived from an individual's genetic information. 17 Sec. 8. (1) Subject to subsection (2), a person shall not 18 disclose, or be compelled to disclose by subpoena or any other 19 means, either of the following: 20 (a) The identity of an individual upon whom a genetic test 21 has been performed. 22 (b) Genetic information about an individual that permits 23 identification of the individual. 24 (2) The prohibitions described in subsection (1) do not 25 apply if 1 or more of the following conditions exist: 00629'97 6 1 (a) The individual who is the subject of the genetic test or 2 who provides genetic information expressly consents in writing to 3 the disclosure. 4 (b) The disclosure is required to meet a purpose described 5 in section 4. 6 (c) A court having jurisdiction orders the disclosure. 7 (d) The disclosure is required to furnish genetic informa- 8 tion relating to a decedent for medical diagnosis of blood rela- 9 tives of the decedent. 10 (e) The disclosure is to an insurer, health care corpora- 11 tion, or health maintenance organization under contract to pay 12 all or a portion of the genetic test costs, and the disclosure is 13 limited to identification of the individual and the cost of 14 obtaining genetic information from, or providing a genetic test 15 to, the individual. 16 (3) A person who violates this section is guilty of a felony 17 punishable by a fine of $5,000.00 or imprisonment for not more 18 than 1 year, or both. 19 Sec. 9. The requirements imposed under this act for acquir- 20 ing, retaining, or disclosing genetic information about an indi- 21 vidual apply to each acquisition, retention, or disclosure of 22 genetic information about the individual. 23 Sec. 10. A person who violates this act is liable for all 24 actual damages, or $10,000.00, whichever is greater, including 25 damages for economic or noneconomic injury, established in a 26 civil action to have been proximately caused by the violation, 27 plus reasonable attorney fees and costs. 00629'97 Final Page.