Week of May 25 - May 31, 2008

Washington, DC - President Bush just signed into law the Genetic Information Nondiscrimination Act of 2008 (GINA), providing vital protection for Americans against the misuse of genetic test-results by health insurers and employers.

The newly signed law prohibits employers from using genetic information in hiring, firing, pay or promotion decisions. It also forbids health insurers from requiring genetic testing and from using genetic information to deny benefits or raise premiums.

Thirteen years in the making, this law comes at a propitious time as genetic testing technologies are proliferating and it is becoming commonplace for people to want to know their risk for diseases such as Alzheimer's.

The President, upon signing the bill into law, said, "I want to thank the members of Congress who've joined us as I sign the Genetic Information Nondiscrimination Act, a piece of legislation which prohibits health insurers and employers from discriminating on the basis of genetic information. In other words, it protects our citizens from having genetic information misused, and this bill does so without undermining the basic premise of the insurance industry."

"I also want to pay homage today to -- and not only to members of the Congress who are behind me, but also to Senator Ted Kennedy, who has worked for over a decade to get this piece of legislation to a President's desk. All of us are so pleased that Senator Kennedy has gone home, and our thoughts and prayers are with him and his family."

America's response was very positive. “Americans have been waiting a long time for this bill, but the wait has been worth it,” said Washington, D.C., Genetics and Public Policy Center Director Kathy Hudson. “Our challenge now is to make sure that doctors and patients are aware of these new protections so that fear of discrimination never again stands in the way of a decision to take a potentially life-saving genetic test.” The Center compiled this table showing what GINA does and does not do.

Until now, individuals’ genetic information has been protected only by a largely untested patchwork of state and federal regulations. According to a poll conducted last year by the Center, 92 percent of Americans are concerned that results of a genetic test could be used in ways that are harmful to them. GINA’s passage should allay public fears of genetic discrimination, allowing individuals to take advantage of the genetic tests that are now clinically available for approximately 1500 diseases.

GINA prevents health insurers from denying coverage, adjusting premiums on the basis of genetic information, or requesting that an individual undergo a genetic test. Similarly, employers are prohibited from using genetic information to make hiring, firing, or promotion decisions. The law also sharply limits an employer’s right to request, require, or purchase an employee’s genetic information.

The law helps reassure patients who could benefit from genetic testing but have forgone it out of concern over possible repercussions. When people opt not to be tested, they lose the opportunity to seek monitoring and preventive care. Passage of GINA means that Americans will no longer have to make trade-offs between genetic privacy and appropriate health care.

GINA will benefit genetic research as well as individuals. Linking gene variants to health outcomes often requires studies involving large numbers of people, but scientists report that potential subjects have been deterred by the fear that their information could be used against them by employers and insurers. Now, however, scientists will be able to assure study participants that neither their participation in a research study nor their genetic information can be legally used against them by their employers or health insurers.

But don't start running off to get yourself genetically tested unless the lab has some strict privacy policies. The health insurance measure does not go into effect for another year and the employment measure will take another 18 months.  In addition, there is a fear that the law may be hard to be prosecuted. Says Nancy Wexler, president of the Hereditary Disease Foundation, “It’s very hard to prove why somebody is firing you.” In addition, watch for everyone getting on the genetics bandwagon, especially new companies marketing genetic tests in the wake of the law’s passage. Make sure you understand what you’re getting into before taking any of these tests and think carefully about what result the information you will learn from it will have on you.

As a result of the bill's becoming a law, a rise in genetic testing is expected as well as the willingness to participate in genetic research. Olympia J. Snowe, a leading sponsor of the legislation in the Senate, in describing the huge significance of GINA, called it “the first civil rights act of the 21st century.”

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MORE INFORMATION

Chart - What GINA does and does not do

SOURCES:

White House Press Release

Aruna Prabhala, Genetics & Public Policy Center, May 21, 2008

ARTICLE BY:

Roberta Bienenfeld and Peter Berger, Alzheimer's Weekly

Reviewed for medical accuracy by Dr. Boaz Ancselovic, MD, Geriatrician, Alzheimer's Weekly

COPYRIGHT:

Copyright © 2008. Alzheimer's Weekly LLC. All rights reserved.