CNS STORY: Direct-to-consumer genetic tests raise ethical, medical questions

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WASHINGTON LETTER May-6-2005 (880 words) Backgrounder. xxxn

Direct-to-consumer genetic tests raise ethical, medical questions

By Nancy Frazier O'Brien
Catholic News Service

WASHINGTON (CNS) -- In the emerging field of genetic testing, there have always been an abundance of questions: Would you want to know if you might get an incurable disease? Do you have a responsibility to your future offspring to assure that you are not passing on a painful or potentially fatal medical condition? Should you test if the results could be used against you by an insurer or employer?

Now, as genetic testing enters a new phase, there's another question: Should you have the tests performed in a medical setting or in the privacy of your own home?

The Human Genome Project, completed in 2003, has given rise to more than 800 clinical tests for a genetic disposition toward Parkinson's disease, Huntington's disease, hereditary breast cancer, Tay-Sachs disease, cystic fibrosis and dozens of other diseases or conditions.

Direct-to-consumer tests, with results communicated to the patient over the Internet, offer the latest wrinkle in genetic testing. Genetic counseling is sometimes -- but not always -- offered along with the test results.

With little government regulation or oversight, those tests "range from the reputable to the reprehensible," said Kathy Hudson, founder and director of the Genetics and Public Policy Center at Johns Hopkins University, during a recent public forum at the National Press Club in Washington about medicine and the marketplace.

Hudson, whose organization sponsored the forum, said some companies are offering skin care products allegedly developed for a specific individual based on his or her genetic makeup, while others purport to be able to treat addictions to everything from alcohol and cocaine to sugar and sex by analyzing a person's genes.

Much of the genetic testing industry today, however, is aimed at two "particularly vulnerable" groups -- infertile couples and those at risk of cancer, said Dr. Michael T. Mennuti, professor and chairman of obstetrics and gynecology at the Hospital of the University of Pennsylvania in Philadelphia and president-elect of the American College of Obstetricians and Gynecologists.

The tests "can be useful in modifying behavior" -- for example, convincing a person with a propensity toward lung cancer to stop smoking -- or in helping patients "make responsible decisions," Mennuti said.

But Helen Wallace, deputy director of GeneWatch UK, a British organization working to ensure that genetic technologies are used in the public interest, warned about the downside of that decision-making in an article for the March-April 2005 edition of the GeneWatch newsletter.

"Widespread genetic testing may foster the misleading implication that only a minority of people with so-called 'bad genes' need to eat a healthy diet or quit smoking," she wrote. "All people can benefit from this advice. In addition, many of the most popular genetic tests look for predisposition to diseases and disorders that are far more heavily influenced by environmental factors than by genes."

Mennuti and other panelists at the Washington event also said some unscrupulous marketers of genetic tests might tell patients that the use of the tests will help them overcome health problems that cannot be cured simply by knowing about a defective gene.

Women who have delayed childbearing until age 45 or later, "if an abnormality is found, may think that by treating the abnormality they will have a child," said Dr. Richard T. Scott Jr., a reproductive endocrinologist. "But that's not true."

Scott also noted that knowing about a defective gene will not necessarily help a patient, and instead may just add a reason to worry. "A lot of people have abnormal genes that have no effect on their current health status," he said.

Ryan Phelan of DNA Direct said the direct-to-consumer tests offered by her company might allow the testing to reach people who would not request them through their physicians because of concerns about whether the test results could reach their employers or health insurance companies.

At prices ranging from about $380 to more than $1,500, DNA Direct offers testing at home for genetic abnormalities related to thrombophilia, a blood disorder that can lead to the formation of blood clots; hemochromatosis, a hereditary iron overload disorder; ovarian or breast cancers; and a range of conditions affecting fertility.

"We believe that genetic testing is about empowerment, not fear," the company says on its Web site. "Knowing all the risks you face -- genetic, lifestyle, environment, age -- can help you see the big picture and give you a bird's-eye view of your personal health."

The question of how genetic testing can be used by employers is currently being debated in Congress.

The Genetic Information Nondiscrimination Act of 2005, already passed by the Senate on a 98-0 vote, is under consideration by three House committees.

The legislation would define as "an unlawful employment practice" any move "to fail or refuse to hire or to discharge any employee, or otherwise to discriminate against any employee ... because of genetic information ... (or information about a request for or the receipt of genetic services by such employee or family member of such employee)."

When she introduced the bill in the House in March, Rep. Judy Biggert, R-Ill., said the legislation "provides common-sense protections for both consumers and companies."

"No one should be afraid of taking advantage of the latest science to protect their health or that of their families," she said.

END

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