Genomics
Privacy and Progress in Whole Genome Sequencing concludes that to realize the enormous promise that whole genome sequencing holds for advancing clinical care and the greater public good, individual interests in privacy must be respected and secured. As the scientific community works to bring the cost of whole genome sequencing down from millions per test to less than the cost of many standard diagnostic tests today, the Commission recognizes that whole genome sequencing and its increased use in research and the clinic could yield major advances in health care. However, it could a
SESSION 2: PROTECTION OF PRIVATE AND PUBLIC GENOMIC DATABASES
DR. WAGNER: Our next session is on protection of private and public genomic databases. And if Dr. Chahine and -- Drs. Chahine and Rodriguez would come forward. Wonderful.
We'll be hearing first from Dr. Ken Chahine. He is the senior vice president of Ancestry.com, well known online resource for family history and general manager for Ancestry DNA where he leads the development and commercialization of population genetics at the website which is the same name, AncestryDNA.com.
DR. GUTMANN: Good morning, everybody. I'm Amy Gutmann. I'm president of the University of Pennsylvania and chair of the Presidential Commission for the Study of Bioethical Issues. On behalf of my vice chair Jim Wagner who is president of Emory University and myself I welcome you all to this our tenth meeting.
Before we continue and in order for us to continue officially I want to recognize our designated federal officer, Dr. Lisa Lee. Lisa, would you please stand up? Lisa is the executive director of our Commission. Thank you.
SESSIONS 5 & 6: MEMBER DISCUSSION OF RECOMMENDATIONS
DR. GUTMANN: Welcome back, everyone. If you would please take a seat we will get started. This is the beginning of a series of sessions in which we as members of the Commission will discuss in real potential form possible draft -- well, these are draft recommendations and we'll discuss them as a Commission.
SESSION 4: ROUNDTABLE DISCUSSION
DR. WAGNER: But don't go anywhere. No, please don't go anywhere. In fact, what we want to do is invite back now all of our other morning's guests and speakers, if they would join us. And I think we've got name tags up here to remind you who you are.
SESSION 3: CONSENT AND RETURN OF FINDINGS
DR. GUTMANN: Commission members, please be seated. Welcome back, everybody. We are about to welcome Dr. Bartha Knoppers. And Dr. Knoppers will speak with us about consent and return of research results.
SESSION 7: MEMBER DISCUSSION OF RECOMMENDATIONS
DR. GUTMANN: Okay. We are going to jump right into our first session.
So, yesterday we began with some of our recommendations and had a very, I thought, productive discussion of them. Today we are going to continue with them.
They clump into two big categories. One is consent to hold genome sequencing and to the possible findings and how they will be treated, and the other is oversight of them.
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