At TEDMED 2014, Amy McGuire, Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine, made us think twice about the unintended consequences of getting our genomes sequenced. We reached out to her learn more.
What motivated you to speak at TEDMED?
I have seen many TED and TEDMED talks over the years, and have always found them to be incredibly thought-provoking and inspiring. To be honest, at first I was a bit intimidated to give a TEDMED talk. I questioned whether my story was worth telling to such a large audience, and I worried about stepping outside my comfort zone of a typical academic lecture to explore the more personal and humanistic side of my work. However, I feel very passionately about how our ability to learn increasingly more about our biological make-up through new genomic technologies influences how we think about the more existential question of who we really are. Giving a TEDMED talk allowed me to explore this question for myself and, I hope, to initiate a more public dialogue on this topic.
Why does this talk matter now? What impact do you hope the talk will have?
A complete draft of the human genome was published less than 15 years ago. It took 13 years and $3 billion to complete the Human Genome Project. Today, individuals can have their genome sequenced for just a few thousand dollars. For many, genome sequencing can provide important information to help diagnose and treat disease. Others are interested in having their genome sequenced because they want to know their future risk of disease. As genome sequencing becomes more widely available, individuals will need to make informed decisions about whether or not they want this information. I hope that this talk will help others understand the benefits and limitation of genomic sequencing and help make more reflective and informed decisions about obtaining their own genomic information.
What kind of meaningful or surprising connections did you make at TEDMED?
The most meaningful connection I made at TEDMED was with a delegate whose children are suffering from a rare undiagnosed genetic condition. They are very sick and she had been talking to researchers and physicians all over the United States about trying to get their genomes sequenced. After hearing my talk, she sought my help and I was able to connect her with my colleagues at Baylor College of Medicine who agreed to sequence her children’s genomes. While talking with her, it became clear just how difficult the diagnostic odyssey with her children has been. I am not sure if the genome sequencing will provide her with the answers she is looking for, but it meant a lot to me to hear her story and to be able to help her make the connections she was looking for.