Genetics
Discrimination, Concerns, and Protections
To track the progress of federal legislation:
House of Representatives - http://thomas.loc.gov/cgi-bin/query/D?c110:7:./temp/~c110mk70Zv::Senate http://thomas.loc.gov/cgi-bin/query/D?c110:6:./temp/~c110mk70Zv::
In New York State
“ New York State laws amend the civil rights law and insurance law to protect the confidentiality of genetic test results and prohibit the administration of a genetic test without valid informed consent by, or on behalf of, the subject of the test. Each disclosure or redisclosure of the test results requires the express informed consent of the test subject, and no general waivers are deemed informed consent. Nonconsensual genetic testing and nonconsensual disclosure of genetic test results are permitted in certain enumerated contexts, such as New York's Newborn Screening Program and New York's program to 'genetically fingerprint' specific classes of convicted criminals. Outside of these enumerated contexts, nonconsensual genetic testing and/or nonconsensual disclosure of genetic test results are permitted only if a court orders such testing and/or disclosure after considering the privacy interests of the subject and the subject's close relatives, the public interest, and, in the case of medical or anthropological research, the ethical appropriateness of such research [N.Y. Civ. Rights Law Section 79-1(4)(d)]. There also is a requirement in the civil rights law that the person signing the informed consent form be advised that he or she may wish to seek professional genetic counseling prior to signing the consent. While informed consent is required to allow research access to specimens, explicit reconsent is not required once linked identifiers are removed (Civil Rights Law §79-l; Insurance Law §2612).”
http://www.health.state.ny.us/nysdoh/cancer/obcancer/append14.htm
Genetic Testing and Screening in the Age of Genomic Medicine
http://www.health.state.ny.us/nysdoh/taskfce/screening.htmTo get a copy of the report write to: NYS Legislative Commission on Science and Technology, LCST Report No. 94-1, September, 1994. This publication is available by contacting The Legislative Commission on Science & Technology, Assembly P.O. Box 167, Albany , NY 12248
National Human Genome Research Institute - http://www.genome.gov/10002077/