(LONDON) -- If you were at a 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. The advancement has uncovered a host of ethical questions concerning if people are entitled to information yielded by their genes.
In order to help answer this question, a British research institute introduced a new online survey 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 website. "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?
Copyright 2012 ABC News Radio