For more than a year, the Presidential Commission for the Study of Bioethical Issues has been examining privacy issues raised by the emergence of low-cost whole genome sequencing.
The technological advances and jump in the use of the tests – the costs of whole genome sequencing could drop to less than $1000 this year – have elevated a range of ethical dilemmas about privacy rights and access to data.
At today’s meeting, the Commission discussed issues around genomics sequencing for more than two hours. Some of the comments:
Amy McGuire, J.D., Ph.D., Associate Director for Research, Center for Medical Ethics and Health Policy, Baylor College of Medicine: “In genomics research, there has been a culture of very open and broad data sharing and access to data. When the field got started, the idea was that they wanted to make data as widely available to other researchers as possible. … In today’s day and age, people continually on a daily basis waive their privacy rights because they perceive the benefits to outweigh the loss of their privacy.”
Madison Powers, J.D. D.Phil., Senior Research School, Kennedy Institute of Ethics, and Professor of Philosophy at Georgetown University: “Sometimes the disclosure of genomics information disrupts your community life, your home life, your family life.”
Commission member Raju Kucherlapati, Ph.D., the Paul C. Cabot Professor in the Harvard Medical School Department of Genetics: “Look at me. I’m short, bald, I’m a brown-skinned person. All of these things could be used to discriminate against me. They say, Raju is short. It’s happens all the time. Go to the Internet and people get a lot of information. A lot of people put all the information on Facebook. People are blogging about what they are doing every day. There is a lot of information out there. What is so special about genomics information? What is it that people are worried about? How are they going to make fun or you and socially discriminate against you?”
Greg Biggers, Board Member, Genetic Alliance, and Chief Executive Officer, Genomera: “What do patients want? We want control and influence over data and tissue and outcomes. Yes, you have to ask to use our tissue and data. We want trust, we don’t want to do this in an environment of confrontation. If desired, we must return information to participants. We want research to flourish and we want to join in a common cause to make a difference. We will be shareholders in a common cause.”
Leonard d’Avolio, PhD., Associate Center Director for Biomedical Informatics, VA Boston Healthcare System: “Genomics sciences will not happen without a huge number (of participants), and too many of our policies are absolutely inadequate of where we need to be. It’s great seeing (technologies) develop outside health care, but it’s a shame it’s not happening in our health care system.”
