In an enormous breakthrough for biological research, scientists have announced completion of a rough draft of a complete map of the human genetic code. Questions about the use of such information are bound to follow. Are states ready to safeguard the privacy of an individual’s genetic information? Will it be treated as part of a medical record? Or will it be protected in a category of its own with stricter safeguards?
The basic goal of the project is to map the sequence of the human genetic code, or DNA, which has an estimated 3 billion parts. Two research teams are currently competing to unveil a sequence — Celera Genomics, a privately funded company, and a publicly funded government and academic effort coordinated by the U.S. Department of Energy and the National Institutes of Health.
According to the Department of Energy, the complete sequence is so long that if it were compiled in books, it would total 200 volumes the size of a Manhattan phone book (1000 pages each). While this amount of data seems unwieldy, the fact that human genetic codes are available raises questions about what this information will be used for when scientists are able to understand the sequence, which some warn is a long way off .
With information that could reveal a person’s predisposition to cancer or high blood pressure at hand, privacy and genetic profiling for health insurance are two major concerns.
The federal Health Insurance Portability and Accountability Act (HIPAA) of 1996 is the only federal law that deals with genetic information. HIPAA prohibits discrimination based on genetic information for group health plans, generally those with 50 or more people. (The recently defeated federal patient’s bill of rights would have dealt with genetic privacy as well.)
Many states have already picked up where HIPAA left off, passing laws that bar discrimination based on genetic information in individual health insurance policies. Thirty-two states have such laws–the states that do not are: Alabama, Alaska, Arizona, Arkansas, Idaho, Iowa, Massachusetts, Mississippi, Nebraska, North Dakota, Pennsylvania, South Dakota, Texas, Utah, Vermont, Washington, West Virginia and Wyoming.
This March, Michigan became the latest state (and the only state this year) to enact a law prohibiting discrimination based on genetic information in individual health insurance policies. Also included in the package of 12 laws dealing with genetic information signed by Gov. John Engler was a law requiring consent to disclose genetic information.
The level of privacy afforded genetic information is also at issue in the states.
“The question isn’t whether states are acting to protect medical records information. The real question is should legislators act to provide stronger provisions for genetic information?” said Cheye Calvo genetics policy specialist at the National Conference of State Legislatures.
In addition to Michigan’s recently enacted genetic privacy law, 18 other states have taken action to guard genetic information even more zealously than other medical records, including Arizona, California, Colorado, Delaware, Florida, Georgia, Illinois, Missouri, Nevada, New Hampshire, New Jersey, New Mexico, New York, Oregon, South Carolina, Texas, Vermont and Virginia.
As the issues surrounding genetic information, like the human genome project itself, keep growing, there may be more action on these issues in the states’ 2001 legislative sessions.
“Now what we’re seeing are the more subtle debates–life insurance [for example],” Calvo said.
Presently, only Georgia and Montana have laws that prohibit discrimination based on genetic information in both life and disability insurance. Sixteen other states restrict or regulate the use of genetic information with respect to life and disability insurance benefits, but they don’t bar its use for underwriting purposes. For example, California condones the use of genetic information by life insurers, but it says life insurance companies can’t require genetic tests.
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