The blog of the 2009 – 2017 Presidential Commission for the Study of Bioethical Issues

Ethical questions around genetic testing

Just 10 years ago, a complete personalized genome test cost $3 billion. Some groups say that this cost could drop to as low as $1000 this year.

With the tests becoming more affordable, and more and more people getting whole genome sequencing tests, a host of related ethical issues are getting more attention, experts told the Presidential Commission for the Study of Bioethical Issues today in San Francisco.

Among them: Who will interpret this genetic data? Is it ethical to allow health care providers to interpret the data without a health systems infrastructure to help them interpret it? What will be the privacy protections to people who have the testing? Are privacy issues around genetic testing any different from other personal health information?

The Commission heard differing views on the thicket of ethical issues surrounding the emerging field.

First, though, it heard from an expert who tried to put the field in perspective.

“Our ability to acquire person-specific DNA data far exceeds our understanding of this information,” said Dr. Daniel Masys, Affiliate Professor of Biomedical and Health Informatics at the University of Washington School of Medicine. “… Genomics is the poster child for complexity in health care.”

Said Masys: “The Marcus Welby model that doctor knows everything and can do it right is hopelessly inadequate” for deciphering the intricacies of whole genome sequencing.

“This is on a scale of science that we’ve never seen before,” he said, adding later that in order to detect extremely rare diseases, scientists may need to look at a “group of 10,000 people, or even a million people” to detect genetic mutations in a handful of people.

Commission Chair Dr. Amy Gutmann, President of the University of Pennsylvania, said she was concerned about the public’s lack of understanding around genetic testing.

“There are snake oil salesmen out there for everything, and if you go on the Web you will likely find all kinds of offers” or claims about the benefits of genetic testing, Gutmann said. “As a president of a university, I believe in not only getting more knowledge, but getting it out there to the public. But to what extent, given that science takes time to develop, is there any concern about the amount of misinformation out there?”

Dr. Richard Gibbs, Director of the Human Genome Sequencing Center at the Baylor College of Medicine, agreed with Gutmann that misinformation was an issue.

“The slow pace of discovery that can transform lives is dramatically affecting … the distribution of this data. That is a vastly higher risk than someone who may foolishly sign onto a snake oil saleman. I come from another (perspective).”

Gutmann persisted, “People get harmed and sometimes killed by malpractice. You can’t just brush it away.”

“Absolutely,” Gibbs said. “There’s tension here. But the danger of not knowing is also a risk.”

In a second panel, George Annas, Chair of Health Law, Bioethics & Human Rights at the Boston University School of Public Health, argued that the results of genetic testing were “uniquely private” and that any use of that information for research should be closely controlled.
“The most important part of genetic information is individual to you,” Annas said. “It’s the way you look at your life. You can look at your genome as your future diary. No one should open that diary without your consent.”

Mark Rothstein, the Herbert F. Boehl Chair in Health Law and Medicine at University of Louisville School of Medicine, said that privacy concerns were just one of numerous issues around genetic testing.

Among those concerns, he said, were whether people should have to opt in to a study using genetic information or whether they had to specifically say they wanted to opt out of it.

“If you test it, sequence it, the results will be used,” Rothstein said. “The only questions are how broadly and for what purposes, what consequences? Will genomic information replace Social Security numbers? Will we become a society of the worried well?”

He continued: “And will genomic information increase health inequality? At the very least, genomic information will likely be used in ways we can’t predict now.”

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This is a space for the members and staff of the 2009 -2017 Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

As of January 15th, 2017 this blog will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues

Learn more about the 2009 - 2017 Presidential Commission for the Study of Bioethical Issues.