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Guest Commentary: September 1, 2001
We Must Stop Abuses of Private Medical Information
The Honorable Edward Kennedy
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Just over a year ago, scientists announced the completion of a task that once seemed impossible -- deciphering the entire DNA sequence of the human genetic code. ...
[A] tiny "DNA chip" contains the sequence of 60,000 human genes. It can be used to detect genetic traits in ways that will assist patients in receiving treatment or even taking steps that will prevent the onset of disease -- long before any symptoms of that disease are apparent.
But this same chip in the hands of an employer or a health insurance company could be used to deny a patient needed health care, or deny an employee a job or a promotion. DNA chips like these will affect the 21st century as profoundly as the computer chip affected the 20th century. The challenge is to see that this technology is used to improve the health of Americans -- not to discriminate against them. ...
[T]he danger of genetic discrimination is very real. Employers have already used genetic information to try to deny benefits to which workers are entitled. ...
Clearly, we need to act now, to stop these abuses of private medical information. President Bush has recognized the urgency of this problem, and supports the enactment of legislation to ban genetic discrimination, and I'm optimistic that such a ban will be signed into law this year.
Strong protections are contained in the legislation introduced by Senator Daschle. It prohibits health insurers from using genetic information to deny health coverage or to raise premiums for coverage. It bars employers from using genetic information to make decisions about hiring, promotion, salary, or other workplace rights and privileges. It bans insurers and employers from seeking genetic information and from requesting or requiring individuals to take genetic tests. It restricts disclosure of any genetic information that the insurer or employer possesses. It provides strong remedies, giving people who have suffered genetic discrimination the right to seek redress in court.
Prohibiting discrimination isn't enough. We must also provide strong enforcement provisions, and provide meaningful remedies to individuals whose rights are violated. Strong remedies are needed to ensure that employers and insurers will implement the necessary protections.
We owe it to all Americans to see that the extraordinary promise of this scientific revolution is fulfilled, and that people are benefited -- not harmed -- by the wealth of new information available. The Daschle bill is urgently needed, and the time to pass it is now.
Note: The above commentary has been adapted from comments Sen. Kennedy made at a Senate hearing, July 25, 2001.
 How to contact Sen. Edward Kennedy (D-Massachusetts)
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