Should People Know About the Results of Their Genome Screening?

PHOTO: Should people whose genes are being screened be privy to whatever health information researchers learn about during analysis?
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If you were at higher risk for developing a condition like Alzheimer's disease or breast cancer, would you want to know about it?

With rapid advances in genome sequencing, researchers are learning more about people's susceptibility to certain diseases, and a host of ethical questions about whether people are entitled to information yielded by their genes are causing scientists concern.

In order to help answer this question, a British research institute introduced a new online survey designed to gauge people's opinions, asking questions such as whether relevant findings from genome studies should be shared with research participants and whether other information uncovered during analysis should also be shared.

A team of ethicists from the Wellcome Trust Sanger Institute developed the tool because of a disagreement with the current practice of keeping findings anonymous and not revealing information that could impact people's health later, according to a press release.

"Although the scientists might be trying to find the genetic basis of one disease, e.g. breast cancer, by virtue of looking across all genes in one go, they might uncover an increased risk of developing something else, e.g. Alzheimer's," an introduction to the survey says on the web site. "The volunteer who provided their sample for genomic research might be interested in this information. It hasn't been routine practice to share this, but should it be?"

"We need to understand what people want from whole genome testing," said Anna Middleton, an ethics researcher at the Sanger Institute.

Bioethicists in the U.S. say they would welcome public input.

"One of the implications of gathering this survey data is it will help determine what kind of policy ought to get made," said Art Caplan, professor of bioethics at the University of Pennsylvania, who was not involved in the Wellcome study. "We should be moving toward policy, but we have no idea what the public wants."

Caplan explained that there are a number of ethical challenges posed by genetic testing.

If scientists studying genes discover an increased risk for a condition that could affect other family members, should they be obligated to tell the research participant? What about that person's family members?

And, he said, who should deliver the news? Should it be the research participant's doctor, or the researchers themselves?

The survey includes questions about who should be responsible for relaying information.

But the survey also asks participants how they would feel if they learned that they had conditions that are are not serious or pose any immediate danger. And it also asks whether people want to know about findings that are "uncertain and cannot be interpreted at the moment."

Genetic analysis often reveals information that is merely probable and not definitive, said Ken Goodman, professor and director of the Bioethics Program at the University of Miami's Miller School of Medicine.

"It's really not clear what to do with these findings," he said. "We don't want to withhold information, but also don't want to give it too soon."

Another problem with developing policy related to the release of genetic information is a general lack of understanding of genetics.

"A lot of people don't understand genetics. They think genetic information points in a straight line to future consequences, but it's more complicated than that," Goodman said.

Caplan and Goodman both said there have been a number of smaller, similar surveys done, but the British survey is very large.

"If we can get a handle on what ordinary people value, it will be really useful to develop policies that can manage this information at an individual level and on a level of society," Goodman said.

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