Personalized Genomics Panel at Jewish Community Foundation in Palo Alto
Waiting for full sequence?
Photo credit: Julie Blaustein
Last night I had the chance to cover a Personal Genomics: What Consumers and Investors Want to Know panel at the Jewish Community Federation. You can watch the entire conversation here: http://www.livestream.com/sfjcf
Panelists:
Michael Goldberg, Partner, Mohr Davidow Ventures
David Magnus, PhD, Chair, Program in Regenerative Medicine Sub-Committee on Bioethics and Conflict of Interest, Stanford University
Hugh Rienhoff, MD, Founder of MyDaughtersDNA.org
Ashley Gould, General Counsel, 23andMe
Moderator:
Robert Blum, President and Chief Executive Officer, Cytokinetics and Chair, Business Leadership Council of the Jewish Community Federation
- Michael Goldberg stated the businesses Mohr Davidow are involved with are physician mediated, if not, then genetic counselors help interpret the results. David Magnus brought up ethical issues such as data ownership, clinical utility of SNP tests.
- Hugh Rienhof gave us an update on his quest to find a diagnosis for his daughter by sequencing genes: hers, their family and other volunteers.
- Ashley Gould said 23andMe is not interested in the technology but rather the genetic data and data interpretation with an emphasis on research to make personalized medicine a reality.
- David gave the strongest opinion, declaring that the data from Navigenics and 23andMe as clinically useless since it's "just a drop in the bucket." Ashley seconded David's opinion, saying for the second time in the evening that data from 23andMe is not meant to be used for clinically relevant health decisions and encouraged anyone with concerns to consult a doctor.
The panel was in agreement that full sequencing is the future, it's not a matter of how but rather of when. Michael Goldberg addressed the question of how to make money from this new world by ending with, "We want to make sure that we don't get ahead of what society is ready for." The take home from the panel is "Yes, full sequence is the next step!", answering the question at the beginning of this post, "Waiting for full sequence?"
On a bigger level though, a small instantaneous community sprang up because of our shared interest in personal genomics. Though this event happened in Palo Alto, CA in a space that is constrained to a few hundred people in the auditorium, technology has made it possible to have almost instantaneous communications. We had real-time discussions over Twitter and in the chatroom from people thousands of miles away and internationally. Just glancing over who I talked to, the group consisted of a Health 2.0 activist, a government employee, a lawyer specializing in genetics and a human/computer interaction technologist. The panelists came to this event with their lens: Michael because he invests in the space, Hugh because of his daughter, David for the societal issues personalized genomics brings up and Ashley because of her father. The people following the live stream and on Twitter also came for their own reasons, one person because he is adopted and has no family history to rely on at the doctor's office, another because of her interest in patient advocacy. I'm sure everyone in the audience had their own reasons for attending, as many as the number of people who were listening. This event brought people with a common interest together and even if none of us ever meet again, new social technology made is possible and easy to connect and reconnect. The next challenging facing us is how we use this new socialized web to move whatever needles we choose.
