|
|
|
The Genetic Privacy Act complements and moves beyond current federal proposals for protecting medical information. It would require explicit authorization to collect DNA samples for genetic analysis, limit uses of the samples and genetic information obtained from them, and set forth penalties for violations. The act aims to protect individual privacy while permitting genetic analysis for medical and identification purposes and legitimate research. Under the act, anyone who collects a DNA sample such as blood, saliva, hair, or other tissue for genetic analysis is required to * provide specific verbal information and a written notice of rights and assurances before sample collection, * obtain written authorization containing required information, * restrict access as authorized by the sample source, and * abide by the sources instructions regarding maintenance and destruction of DNA samples. Special rules regarding DNA sample collection and research are set forth for minors, incompetent persons, pregnant women, and embryos. Research is permitted on nonidentifiable samples when not forbidden by the samples source; on individually identifiable DNA samples, research is prohibited unless specifically authorized by the source. The overarching premise of the act is that no stranger should have or control identifiable DNA samples or genetic information about an individual unless the source specifically (1) authorizes the collection of DNA samples for analysis and the creation of genetic information and (2) retains access to and control over its dissemination. Rules protecting genetic privacy must be clear and made known to the medical, scientific, business, and law enforcement communities and the public. |
加入最爱