Genetic Nondiscrimination

The Center for American Progress has an excellent (long) article on genetic nondiscrimination, wih the title, Genetic Non-Discrimination, Policy Considerations in the Age of Genetic Medicine. The artcile represents a summary of a full report, also available on the website.

After a brief introduction to genomes and genetic testing, they state:

For individual Americans, this growth of genomic data means more accurate personal genetic information will become available to them, their physicians and, yes, their insurance companies, to make perhaps monumental health care decisions. This new information could well be a blessing or a curse, depending on how it is handled by patients, their doctors and their insurers. That’s why legislation based on the best bioethical principles needs to be enacted by Congress this year.

They present the discrimination issue as follows:

. . . new medical dilemmas . . . are predicated on the assumption that patients will feel comfortable and safe having testing done and sharing it with their healthcare providers. The main reason patients would want to keep their genetic information private—or not even have the test in the first place—is fear of being discriminated against by employers or insurance companies. According to a 2007 survey by the Genetics and Public Policy Center, 93 percent of respondents thought that employers should not have access to their genetic test results, and the same percentage thought insurers should not have access.

This fear of discrimination could lead to an under-utilization of genetic tests by patients, which would ultimately hurt employers and insurers, too, since patients will not be able to take preventative measures that could eliminate the need for expensive care, medical leaves, and sick days down the road. Although current state and federal laws do provide patients with some protection from genetic discrimination, they still remain inadequate and vague.

And summarize the current Federal safeguards as follows:

For instance, as of 1996, the Health Insurance Portability and Accountability Act, or HIPAA, prohibited group health insurers from using health-related information in making coverage decisions or setting premiums for an individual who is part of a group plan; and the Act specifically lists genetic information as such. Additionally, HIPAA states that genetic information in the absence of a diagnosis cannot be considered a preexisting condition.

There are also some provisions in the Social Security Act, the Americans with Disabilities Act, and the Civil Rights Act that could apply to genetic information but do not mention genetic information explicitly. A patchwork of state laws regarding privacy, employment, and insurance practices also exist, with many state laws explicitly mentioning genetic information but all of them offering different levels and forms of protection.

Federal policies that could be put in place by the proposed Genetic Information Nondiscrimination Act, or GINA (S. 358), now before Congress would further prevent discrimination by extending protections to holders of individual insurance plans, and would protect whole groups of insured people from being discriminated against based on the genetic information of some of the individuals in that group. The GINA legislation would also create a policy that protects individuals from discrimination by employers.

This legislation has broad support from legislators on both sides of the political aisle, but has yet to be enacted into law. Versions of GINA passed in the Senate in 2003 and 2005, but a version did not pass in the House until 2007. Now the Senate has yet to pass the 2007 version. This is because a group of Senators have placed a “hold” on the legislation. The possible objections that these Senators might have to the bill are most likely in line with the objections raised by groups such as the U.S. Chamber of Commerce, which feels that the existing state and federal protections are sufficient and that federal legislation would open insurance companies up to unnecessary lawsuits. Another objection might be similar to the one expressed in the Bush administration’s statement that there is not a significant “firewall” between Title I of the bill, which deals with insurance, and Title II, which deals with employers.

Word from the Hill is that support is growing backstage for the Genetic Information Nondiscrimination Act (GINA) and that the Bill might be brought to the Senate floor for unanimous approval. There was no action today (22 April 2008), but something may happen tomorrow.

See the previous blog entry for ways in which you can become involved, if you are interested.

Marie Godfrey, PhD




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