TEDMED: When sequenced genome data could cause harm

Having more information is not always a benefit, Amy McGuire, JD, PhD, associate professor of biomedical ethics and director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine, told the audience at TEDMED 2014 in San Francisco. Especially when it comes to knowing results of your own genomic sequencing.

McGuire has studied the human genome for years, but when asked to volunteer her own blood for DNA sequencing, she faced a dilemma.

“At the root of it was coming face-to-face with my own genomic vulnerability. I have a family history of neurodegenerative disease,” she said, and told the story of losing her grandfather to Alzheimer’s disease. “I watched this disease hijack his memory and, eventually, his entire personality.”

Family risk

McGuire’s mother was diagnosed with Parkinson’s disease in her 50s, she said.

“One of the first things I thought about when asked about getting my genome sequenced was, ‘OK, all of the sequencing is good for discovery, and it may benefit others, but what about me?’ ” McGuire said.

When the medical community has access to genomic information, it can be life-saving and lead to more effective therapies, McGuire said. That same information, however, may not be helpful to an individual, particularly if he or she learns they are predisposed to an untreatable disease.

“One person’s transparency may be too much information for another,” she said. “Many people assume that under all circumstances, more information is better. But there may be times or places or people for whom it isn’t wise or compassionate, or even appropriate, for us to burden ourselves with every possible scrap of predictive information. Especially if we treat our genome as if it were a guaranteed, locked-down forecast.”

Most causes of disease are much more complex than a straightforward genetic link, she explained.

“I believe that genetic determinism is the biggest threat to the responsible integration of genomics. Too often, we are seduced by the tendency to simplify the very complex relationship between our genes and our environment, and to reduce the mysterious nature of the human spirit to our genetic makeup.”

Source of stress

McGuire also is concerned that genomic information may be misinterpreted and used to define people too rigidly. She had those same concerns about having her own genetic risks revealed.

“How was I going to feel if I found out that I had a genetic risk of getting Parkinson’s [disease] or Alzheimer’s, or something I didn’t even know I was at risk for, like cancer or diabetes? ” she said. “How would that make me feel? How would that make my family feel? Would my mom feel guilty? Would my husband look at me and instead of seeing me, see the potential burden that I might become for him in the future?”

Concerns about others having access to genetic information that could be used for discrimination are pervasive among people like McGuire who have some resistance to personal genome sequencing. Another concern is that the stress of knowing about a risk factor may lead to altered behavior.

McGuire said almost 1 million people have had their entire genome sequenced. After allowing her colleagues to sequence her genome for research, however, she said she needed time to decide on seeing the results. If she chooses to be made aware, she hopes the knowledge will not lead her to limit the possibilities of what she can do and achieve in her life.

“As the next million people get sequenced, I hope that we as a community remember who we are, and that we use the information to improve health and to better understand our individual and collective biological inheritance,” McGuire said, “that we use it to connect to one another rather than create an even larger divide between us and them.”

For more information:

McGuire A. Presented at: TEDMED 2014; Sept. 10-12, San Francisco.