 |
| |
Spheres of Influence
|
| The Laws of Genetics
Michael Baram Abstract
 The proper use of genetic information is one of the hottest topics on Capitol Hill, with 14 related bills being introduced in the 104th Congress, and 7 bills already on the agenda of the 105th session. State legislatures currently face a surge of over 60 bills to expand protection of genetic privacy and safeguard against genetic discrimination.
While it is accepted that there are tremendous benefits to being able to access genetic information, privacy and human rights advocates, as well as the media, have painted a gloomy and distressingly wide-ranging picture of the possible abuses of such a wellspring of information. Various technological defenses are emerging as possible means of ensuring medical and genetic privacy, including electronic auditing of information access, dedicated modem lines, encryption, and use of passwords and "firewalls."
But the opinion seems to be that judicial standardization is desperately needed. Courtroom decisions about genetic privacy and discrimination are made on a case-specific basis, and rarely does a clear national consensus emerge from the determinations of hundreds of courts. A dual legislative strategy is needed: laws to protect genetic privacy and laws to prohibit genetically based discrimination. States are responding, especially to the latter stratagem.
It has been estimated that over 60 bills on genetic privacy and discrimination have been introduced in state legislatures in 1997. But insiders feel that federal standards are required to prevent genetic research from becoming as cloistered as the information it unearths. The federal bills that are up for debate vary in their breadth and scope. Senator Pete Domenici (R-New Mexico) followed a relatively comprehensive model bill, covering virtually all concerns and issues, in drafting his 1996 federal bill, the Genetic Confidentiality and Nondiscrimination Act. A revised version of this bill was introduced on 11 March 1997 by Senator Domenici and is likely to receive considerable attention because of its scope and detail.
The full version of this article is available for free in HTML format. |
|
|
|
|
