Note: Relative Futility: Limits to Genetic Privacy Protection Because of the Inability to Prevent Disclosure of Genetic Information by Relatives
By Trevor Woodage. Full text here.
The Note considers possible limits to reasonable expectations of genetic privacy given that people share their DNA sequences with their relatives. Most scholars and members of the general public believe that an individual’s DNA sequence is an intensely personal matter and that access to this information should be tightly controlled. The Note considers both legal means by which it might be possible to protect genetic privacy, including recent statutory approaches such as the Genetic Information Nondiscrimination Act, and reasons why individuals might want to keep genetic information private. It also examines situations in which genetic privacy might have negative consequences, as when keeping genetic information confidential might prevent relatives from being tested or treated for diseases for which they are also at risk. The Note also examines limits to genetic privacy, including the fact that genetic information is a shared attribute with DNA sequences shared by relatives, and technologies that have increased the ability to identify the source of DNA samples obtained for research and forensic purposes.
The Note argues that, rather than focusing attention on attempts to protect genetic privacy itself, legislative efforts should instead be directed toward preventing the greater harm of genetic discrimination in employment and insurance settings. It suggests that one way to halt improper uses of personal genetic information would, by analogy to the Fair Credit Reporting Act, allow individuals to determine who had obtained access to their personal genetic information and the reasons this access had been sought. By bringing uses of genetic information into the open, individuals should be empowered to reduce the use of genetic information for discriminatory purposes, even if complete confidentiality cannot be maintained.