Bush calls for genetic privacy

From the NYT:

“If a person is willing to share his or her genetic information, it is important
that that information not be exploited in improper ways,” Mr. Bush said at the
Institutes of Health
. “And Congress can pass good legislation to prevent
that from happening.” He added, “We want medical research to go forward without
an individual fearing personal discrimination.”

The recent issue of Duke’s GenomeLIFE magazine provides more background on the history and potential future of genetic non-discrimination legislation:

GINA is the Genetic Information Nondiscrimination Act, a bill that would ban
genetic discrimination for the purposes of employment or insurance.
Specifically, it would prevent health insurers and employers from using genetic
information to determine eligibility for insurance, set premiums, or hire and fire

But genetic nondiscrimination legislation has been introduced in every
Congressional session since 1995, each time without becoming law. So with the
newly sworn-in 110th U.S. Congress now in session, and with the Democrats
having reclaimed control of both the Senate and the House of Representatives,
at least for the moment, are GINA’s fortunes about to change? And if so, what
would it mean?

As the article points out, the roadblocks facing genetic non-discrimination have not come from the executive branch or the Senate for that matter, but from the House.  Susan Haga, from Duke points out:

Three committees in the House have to look at it and give it their okay—
that’s part of the challenge. And chambers of commerce and groups representing
human resources [HR] for large employers have in the past worried that the
bill will create a new source of litigation for them.

GINA was re-introduced into the House on January 17th, 2007.  You can follow the progress of the legislation at the Genetic Alliance policy page.

Sheryl G. Stolberg. "President Calls for Genetic Privacy Bill" NYT, Jan 18, 2007.

There Oughtta be a Law:The Fate and Meaning of Genetic Nondiscrimination Legislation. GenomeLIFE, Jan-Feb 2007.

Genetic Alliance policy page on GINA


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