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New Genetic Tests for Babies Raise Needed Ethical Challenges, Experts Say
WHITE PLAINS, N.Y., DEC. 18, 2001 - Genetic screening for newborns is rapidly becoming more technologically advanced, but this progress raises difficult and complex ethical questions, experts told a group of journalists last week.
Speaking at a March of Dimes National Communications Advisory Council editorial luncheon, Kenneth A. Pass, Ph.D., director of the New York State Newborn Screening Program, described rapid advances in the use of DNA technology to test infants for the presence of certain inherited metabolic disorders. Dr. Pass said that within 10 years it will be possible to determine from a single drop of blood taken at birth a person's predisposition to numerous diseases and drug reactions, and to design individualized treatments for them.
However, Dr. Pass said, "The testing is the easy part." The social and ethical challenges raised by the ability to perform the tests are far more difficult, he said. These include informed consent, ownership and use of the specimens after testing, screening vs. diagnostic testing, and who should pay for certain tests.
Thomas H. Murray, Ph.D., president of The Hastings Center, agreed that the most important challenges of newborn genetic testing are the ethical and social issues, rather than technical limitations. He pointed out, for example, that disparities among states in the number and type of tests conducted at birth mean too many babies with serious birth defects are not being diagnosed and treated in time.
In addition, Dr. Murray said, millions of pregnant women and children lack insurance coverage and thus lack access to medical care. He also noted that there is no consensus on the many privacy issues raised by testing.
He said he was also concerned about the question of testing newborns for conditions for which there is currently no treatment, for example, Duchenne muscular dystrophy or fragile X syndrome (the most common inherited cause of mental retardation).
Dr. Murray concluded by saying he was also concerned about the possible overselling of the power of genes to the public. "Most serious diseases are not simply genetic," he said. "We should remember that genes are not a road map to the future. There are complex interactions between our genes and our environment, our lifestyle choices, and our experiences."
Nancy S. Green, M.D., associate medical director of the March of Dimes, said testing for genetic disorders must be linked to prompt reporting and appropriate medical care and follow up, including genetic counseling, which is currently not available to many people. She said the March of Dimes has developed policies and specific recommendations for newborn screening tests, and is working to educate the public and health professionals about the benefits, consequences, and responsibilities of the tests.
The March of Dimes National Communications Advisory Council (NCAC) consists of senior-level journalists and was created in 1980 to assist the March of Dimes in identifying topics important to the news media reaching women of childbearing age.
The March of Dimes is a national voluntary health agency whose mission is to improve the health of babies by preventing birth defects and infant mortality. Founded in 1938, the March of Dimes funds programs of research, community services, education, and advocacy to save babies. For more information, visit the March of Dimes Web site or its Spanish Web site at www.nacersano.org, or call 1-888-MODIMES.
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