Privacy key to genetic advances

May 09, 2007|By Karen H. Rothenberg

Genetic research holds great promise to unlock new diagnoses and new treatments, and even to help create pharmaceutical therapies tailored to an individual's genetic makeup. But scientific research and development cannot progress without clinical trials, and these trials can move forward only if the individuals who could benefit are willing to participate.

For that to happen, people must believe that their genetic information will not be used to deny them health care coverage or a job.

A pair of groundbreaking studies reported last week show that researchers have discovered a genetic variation that increases the risk of heart disease by up to 60 percent. These scientists hope that a test for the variant can be developed, enabling doctors to identify and recommend early intervention for heart disease and helping to combat the leading cause of death worldwide. The week before, researchers announced that they had identified seven new genes connected to the most common form of diabetes.

Get used to such announcements. Advances in research mean that discoveries about the human genome are going to begin coming even more rapidly.

Whether you want to know the predictive information about diseases that your genes contain is a significant personal decision. But it should not be influenced by fear of discrimination. Individuals must know they won't be denied health insurance or have coverage dropped because of their genetic information. And workers must be protected against losing their jobs because of employers' concerns about increased health insurance costs or productivity lost to illness.

Unless people are guaranteed that their genetic information will not be held against them, we may never realize the full promise of genomic research. For years, the Senate passed bills in support of genetic nondiscrimination, only to see them die in the House of Representatives. Finally, after more than a decade of attempts, the House passed the Genetic Information Nondiscrimination Act on April 25, by a vote of 420-3. President Bush is ready to sign the bill once the Senate acts. Without such legislation, genomic research's potential for transforming medicine may never move from the research laboratory to the doctor's office.

Since the early days of the Human Genome Project, people have been concerned about the social risks associated with genetic research and have expected strong protections against the misuse of genetic information. But almost 20 years later - and after enormous advances in scientists' ability to sequence and interpret our DNA - we have yet to pass a federal law to safeguard genetic information. The huge promise of genomics is hamstrung by fear.

In a 2006 survey by Cogent Research, 72 percent of respondents agreed that the government should establish laws and regulations to protect the privacy of genetic information. Eighty-five percent said that without a specific law, employers would discriminate against their workers. Sixty-four percent said that insurance companies would do everything possible to use genetic information to deny health coverage.

Fear of genetic discrimination hampers biomedical research and, potentially, health care decision-making.

Congress and the president must prevent genetic information from being used, misused or accessed for nonmedical purposes. Employers should be prohibited from considering genetic information in hiring or firing employees or determining their benefits. Employers and the insurance community have long maintained that they do not use genetic information to determine eligibility or employment status. If this is true, a federal law prohibiting their use of such information should not affect their bottom lines.

The era of genomic medicine is here, but fear continues to paralyze its future. As a matter of social policy, laws that safeguard genetic information will help us honor the commitment to improve our understanding of genetics and its health benefits for all Americans.

Karen H. Rothenberg, a member of the Maryland Stem Cell Research Commission, is the dean, Marjorie Cook professor of law and founding director of the Law and Health Care Program at the University of Maryland School of Law. Her e-mail is

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