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US Congress reopens debate on genetic anti-discrimination legislation

29 January 2007
Appeared in BioNews 393

The proposed Genetic Information Nondiscrimination Act 2007 is poised for fast-track consideration through the US Congress. It was reintroduced into the US House of Representatives earlier this month (HR 493), with its prospects for successful passage into law appearing better than similar past attempts. The Act aims to provide a consistent federal standard of protection against genetic discrimination with respect to employment and health insurance.

With the new Democrat majority in Congress plus presidential and growing bipartisan support, American political wheels appear to finally be greased to pass legislation to safeguard genetic privacy after the bill's long, frustrated past. On 17 January, President Bush, in a roundtable discussion at the National Institutes of Health emphatically urged Congress to pass 'good legislation' that makes genetic discrimination illegal.

Substantial evidence exists that the American public and medical community find the mosaic of state laws to be confusing and inadequate protection against discrimination. It is hoped that a national law would quell the confusion and fears by specifically prohibiting the hiring, firing and promotion of an employee as well as insurance coverage or the premium being determined on the basis of genetic information.

Whilst the House bill is sponsored by the Democrat Representative Louise Slaughter and is currently in committee negotiations, Republican Senator Olympia Snowe sponsored the bill in the Senate with further support from Mike Leavitt, Health and Human Services Secretary. The Senate Health, Education, Labor and Pensions (HELP) Committee is scheduled to vote on the Act this Wednesday, 31 January.

HELP committee chair, Democrat Senator Edward Kennedy and Senator Michael Enzi, the HELP committee ranking Republican issued a joint statement of support on 25 January: 'Without strong protections against genetic discrimination, patients will not make full use of the extraordinary advances made possible from the sequencing of the DNA code'. Senate approval, therefore, seems likely and would be consistent with its unanimous approval of similar legislation in 2003 and 2005.

Studies on breast and colon cancer genetic have shown that many people decline participation in clinical trials and testing for fear of discrimination. Dr Francis Collins, director of the US National Human Genome Research Institute welcomes the Act and believes it represents a 'renewed hope that all Americans will finally receive the protections they need to benefit from gene-based medicine'.

Business groups and Michael Eastman, executive director of labor policy at the Chamber Of Commerce, expressed concern for resulting 'unintended consequences' and potential 'frivolous litigation'. Other lawmakers counter that these are not substantive arguments against the bill.

President Bush Urges Congress To Pass Genetic Privacy Bill
Kaiser Network |  18 January 2007
Senate HELP Committee To Vote on Bill That Bans Discrimination Based on Genetics
Kaiser Network |  22 January 2007
US Congress tries again to propose genetic discrimination legislation
PHGU |  22 January 2007
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