incidental findings

DR. GUTMANN:  Welcome everybody.  It is my great pleasure to welcome members o the Commission and the Commission's staff to the University of Pennsylvania. This is the second meeting we've had here, and this is the first meeting, however, we had in the Smilow Center because when this Commission began several years ago the Smilow Center didn't exist.

And it not only exists, but it is fully occupied, and it is occupied with work that is obviously relevant to the subject of our Commission.

DR. GUTMANN:  We are ready to do our wrap up session for this afternoon. Appropriately the wrap up session is about some overarching recommendations that span the three contexts.

They are important because incidental findings don't just occur in the clinical, research, and DTC context, and they are not just generated by large scale genetic sequencing, imaging, and testing of biological specimens.

We take to heart where we do not think there is genetic exceptionalism, these are issues that span not only the three contexts but other contexts as well.

DR. WAGNER: All right, we are now turning to the third and final, direct to consumer. Anita, thank you for chairing that sub group and we’re interested to hear the report.

DR. GUTMANN: Welcome back everyone. We are moving on to the next topic on incidental findings, and that is a discussion of the ethical management of incidental findings in the research context, and Christine Grady will begin our discussion for us. Christine.

DR. GRADY: Thank you. First I want to recognize the other members of my working group, Nita Farahany and Nelson Michael. And Nelson isn't with us today because he has been deployed.

DR. WAGNER:  The Commissioners will recall that at our meeting in Washington we got into a conversation on several modalities that can generate incidental findings, Lisa Lee led that for us, our executive director, but for the remainder of the day we are going to focus on the contexts within which those modalities generate incidental findings.

Session 7:  Roundtable Discussion       

DR. WAGNER:  We want to do in our final session, Roundtable Session today, what we always afford folks.  And those of you that were here this morning saw the drill, so you won't be surprised at the question that begins our conversation.  And that is to run down the table and ask you in your particular areas in the sessions that we had this afternoon on both education and direct‑to‑consumer issues regarding incidental findings, that one thing you would want to be certain that our Commission takes into consideration as we prepare the report.