Genetic Discrimination Bill Stalls In House

By David Hess


April 20, 2004 


   In what is shaping up as a textbook case of obstruction by inertia, a bill to

curb discriminatory practices in the genetic testing of employees and health

insurance applicants appears to have vanished into a black hole in the House.


   Although a genetics bill sailed through the Senate last fall by a 95-0 vote

after concessions to the U.S. Chamber of Commerce and a coalition of other

business lobbies on remedies and penalties, a similar measure in the House is

snared in a no-man's-land of turf disputes and the lobbies' shift of tactics

from one of grudging acquiescence in the Senate to downright opposition in the



   The Senate bill, sponsored chiefly by Small Business Chairwoman Snowe and

Health, Education, Labor and Pensions Chairman Gregg, with bipartisan backing

from Majority Leader Frist and Minority Leader Daschle, would bar employers and

insurers from testing for genetic markers that suggest a worker, job applicant

or health-insurance buyer might be subject to a debilitating ailment that could

affect job performance or require costly medical care in the future.


   Although the business coalition eventually stood mute as the bill passed, it

has revived its multi-point opposition to such legislation in the House.


   Essentially, said Randy Johnson, vice president of the Chamber's office of

labor policy, "We question the need for the legislation, and we think that if

Congress moves ahead with it anyway, it needs to be narrowed significantly."


   For one thing, the business coalition argued in an issue paper sent to House

members, the legislation needs to acknowledge that if some workers with

specified genetic markers pose a "significant risk to others, then employers

should be able to make employment decisions based on such information."


   It cited hypothetical cases in which a person who operated vehicles or

hazardous machinery were subject to seizures and could put others in danger.


   The coalition also insisted that any federal anti-discrimination law take

legal precedence over the 30 state laws that now exist to bar such practices;

that the law should have an explicit expiration, or sunset, date so Congress

could review its effectiveness and decide whether to renew it, and that results

of genetic tests should be narrowed to include only immediate family members

related by blood and not broad-based family history criteria.


   The coalition's resurgence of opposition took some of the bill's supporters

by surprise. Jeremy Gruber, legal director of the National Workers' Rights

Institute in New Jersey, said he thought most of the business community's

demands had been met in the final version of the Senate bill.


   "The Chamber of Commerce seemed mollified," he said. "But they apparently

decided that the House would be more receptive to their views, so they moved to

start the process all over again. And the House has taken a real step back on

the bill."


   Although no one is sure of the numbers, the bill's advocates contend that

millions of Americans -- potential diabetics, for instance, or those bearing the

markers for various neurological disorders or certain types of cancer -- could

be denied the opportunity to fulfill their career goals simply because of

something that might befall them in later life.


   "No American should be punished for taking a genetic test," said Rep. Louise

Slaughter, D-N.Y., a prime sponsor with Rep. Bob Ney, R-Ohio, of a similar

bipartisan House bill that is languishing there. "No one should have to make a

decision about taking a genetic test based on the fear of discrimination in

employment or insurance."


   Even when legislation is popular -- and the Slaughter-Ney bill attracted 234

co-sponsors, a majority of the House -- that does not mean it will move if

congressional leaders decide to sit on it.


   In this case, the bill was parceled out to three committees -- Energy and

Commerce, Education and the Workforce, and Ways and Means -- thus assuring

time-consuming jurisdictional tugs of war.


   The Senate version, meanwhile, although sent to the House, is being held up

by order of Majority Leader Delay. And House Speaker Hastert, despite an

entreaty from Frist, appears to have largely ignored it.


   The longer the inertia persists, the less the chance that a House bill will

be sent to the floor, particularly in a legislative year foreshortened by the

onset of national elections this fall.


   Debra Ness, president-elect of the National Partnership for Women & Families

and a leading figure in the Coalition for Genetic Fairness, which boasts nearly

100 organizations in its membership, says it is time for President Bush to break

the House blockade.


   After all, she said, he named the genetics discrimination issue as one of his

health-related priorities in this session of Congress. "We haven't given up

hope," Ness said. "We've asked the chairmen [Education and the Workforce

Chairman Boehner and Energy and Commerce Chairman Barton] to hold hearings, and

we've sent a letter to the speaker. And we know there've been a number of

conversations about it between the House and Senate players. But so far, we

haven't sensed any real movement in the House, and time is running out on this



   Although the letter to Hastert was posted last November, the speaker's office

has not responded yet.


   An Education and the Workforce Committee spokesman said Boehner pledged last

fall, after the bill passed the Senate, to hold a hearing on the matter but set

no timetable. "We are looking at holding this hearing in the next couple months

but don't have a date scheduled yet," the spokesman added. "In the interim,

committee staff has been meeting with all of the interested parties on the



   As for the Energy and Commerce Committee, a spokesman said the bill is "being

studied by staff counsel but no decision has been made yet on how to proceed."