Genomics experts debate emerging ethical dilemmas

A group of six ethicists, researchers and other experts gathered May 1 in the Sanford Institute of Public Policy to discuss the ethical implications of the rapidly advancing science of genomics.

An audience of about 200 attended the roundtable discussion entitled "Something Old, Something New: Does Genomics Pose New Ethical Questions?"

Most panelists agreed that there were new aspects to the moral dilemmas raised by genomics-the study of the DNA sequences that define an organism's genetic code. But the majority of the panel said the same questions had been raised throughout history, only in different forms.

"It's the same old great big questions about who we are," said Amy Hall, an assistant professor of theological ethics at the Divinity School.

The discussion began with the question of whether to test for genes-such as those for breast cancer-that cause diseases with few or no treatment options.

"Novel technologies bring with them a certain degree of ignorance," said Dr. Michael Rogers, a senior member of the Forward Studies Unit of the European Commission, a policy think tank for the European Union's governing body. "We have to accept that ignorance and find out what we can do with it."

Dr. Jeremy Sugarman, the director of Duke's Center for the Study of Medical Ethics and Humanities, explained that many women felt pressured into being tested for breast cancer genes and he added that to undergo testing is a decision made for a woman's entire family. This, he said, raises a new ethical question. "The ancient dictum of 'Know thyself' becomes a question:... 'Ought we know ourselves?'" asked Sugarman, also a professor of medicine and philosophy.

But not all the panelists agreed that new information leads to drastically different ethical questions. "Genetic information, by its very nature, being inherited, tells us about our families," said Dan Burns, the director of U.S. Discovery Genetic. "We know that diseases run in families. I think the ethical questions are very similar to what they were before."

Hall said she was concerned that people would be pressured into genetically testing fetuses, then aborting those that did not meet societal expectations.

"It's expected that you will undergo certain levels of testing when you're carrying a fetus," she said, adding that she realized that the choice to abort would be an individual decision. Still, she worried that if it became normal to abort disabled or otherwise "imperfect" fetuses, having such children would be as hard as trying "to drive a horse down your local street."

Dr. Jeff Vance, director of Genomics Research Laboratories at the Center for Human Genetics at the Medical Center, replied that geneticists realized the importance of diversity.

"It's really our job to make sure that there is no determination of what the perfect person is," he said. "Because there is no such thing. In diversity is strength."

Steve Burke, senior vice president for corporate affairs and external relations at the North Carolina Biotechnology Center, discussed the question of genomics' application to non-humans.

He explained that genetic engineering could allow the American chestnut tree, which was decimated by a fungus in the early 1900s, to develop a resistance to the blight and proliferate once more.

"Sounds nice, doesn't it?" he said. "[But] what's next? How do we feel about buffalo?"

The discussion was sponsored by the University's new Institute for Genome Sciences and Policy.

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