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Guest Article
(From the April 28, 2008 issue of Deloitte's Washington Bulletin, a periodic update of legal and regulatory developments relating to Employee Benefits.)
After more than a decade of controversy, the Genetic Information Nondiscrimination Act (H.R. 493) appears to be headed for enactment, as the U.S. Senate voted 95 to 0 to pass the bill on April 24, 2008 – the same vote count the original Senate bill received in 2003. With only brief debate and the adoption of a few amendments, consisting of primarily technical corrections, H.R. 493 now returns to the House, where the bill was approved in April 2007 on a 420-3 vote. According to House Rules Committee Chairman Louise Slaughter (D-NY), who sponsored the bill in the House, the House will vote on the amended bill during the week of April 28 and it is expected to be enacted without controversy.
Senate Statement on Passage of Genetic Nondiscrimination
Immediately after the unanimous vote approving the Genetic Information Nondiscrimination Act (GINA), Senators Edward M. Kennedy, Chairman of the Health, Education, Labor and Pensions (HELP) Committee, Mike Enzi, Ranking Member of the HELP Committee, and Olympia Snowe, the original sponsor of the bill, released the following statements.
Chairman Kennedy said, “This bill opens a new frontier in medicine in which we read the genetic make up of patients to stop diseases before they even happen. This legislation opens the door to modern medical progress for millions and millions of Americans. It means that people whose genetic profiles put them at risk of cancer and other serious conditions can get tested and seek treatment without fear of losing their privacy, their jobs and their health insurance. It's the first civil rights bill of the new century of the life sciences. With its passage, we take a quantum leap forward in preserving the value of new genetic technology and protecting the basic rights of every American.”
Senator Enzi said, “This bill will help fulfill the promise of genetic research to save lives and reduce health care costs, by establishing basic protections that encourage individuals to take advantage of genetic screening, counseling, testing, and new therapies, without fearing that this information will be misused or abused. It protects both employees and employers by setting a standard of conduct that is easy to understand and easy to follow. We are far better off setting uniform, consistent rules of the road clearly and up front, rather than allowing them to be set piecemeal through litigation.”
“Like race and gender bias, genetic discrimination is based on the unchangeable – yet it also requires a deliberate effort to obtain gene data in order to discriminate,” said Senator Snowe. “The passage of GINA today represents the culmination of an effort that began more than ten years ago to put in place landmark protections to safeguard Americans against genetic discrimination.”
The Senate also released the following summary of the GINA.
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Seeing the Glass Half-full and Half-Empty
As would be expected, supporters and opponents of the bill took different views. According to The New York Times coverage on April 23:
…health insurers have "generally expressed support" for the measure but are concerned that the bill could restrict their ability to request certain genetic tests to find the best treatments for patients. Mohit Ghose, spokesperson for America’s Health Insurance Plans [AHIP], said, "There are appropriate uses of information, there are appropriate questions to ask, as long as there is no discrimination." |
Some genetic experts who support the bill say its provisions do not go far enough. Mark Rothstein, director of the bioethics institute at the University of Louisville School of Medicine, said the measure did not have provisions for life or long-term care insurance. Rothstein said that employers already have other legal ways to gain access to prospective job candidate's health data. The legislation "promises more than it delivers," he said.
| The information in this Washington Bulletin is general in nature only and not intended to provide advice or guidance for specific situations.
If you have any questions or need additional information about articles appearing in this or previous versions of Washington Bulletin, please contact: Robert Davis 202.879.3094, Elizabeth Drigotas 202.879.4985, Mary Jones 202.378.5067, Stephen LaGarde 202.879-5608, Erinn Madden 202.572.7677, Bart Massey 202.220.2104, Mark Neilio 202.378.5046, Martha Priddy Patterson 202.879.5634, Tom Pevarnik 202.879.5314, Sandra Rolitsky 202.220.2025, Tom Veal 312.946.2595, Deborah Walker 202.879.4955. Copyright 2008, Deloitte. |
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