Executive Director’s Report

DR. MESLIN: Thanks very much. I'd just like to use five minutes to update the Commissioners and any others here on ongoing items coming out of the NBAC offices. I'd like to acknowledge first that in our effort to continue adding more staff to the Commission's expertise, we have contracted for some communications advice and expertise from Andy Burness, who is here in the room. Mr. Burness has provided this advice and consultation to previous national bioethics commissions, the President's Commission, in particular, as well as the Advisory Committee on Human Radiation Experiments. We are delighted to have Andy join the team. We have completed a contract for a consultant editor. And that person, whom I have mentioned to the Commissioners in previous communications, will be onboard within the next ten days to two weeks. I know that staff is grateful to have that person added. The second item that I know many of you are aware that on the 11th of June, Congressman Shays convened a hearing. He chaired the Subcommittee on Human Resources in the House Committee on Government Oversight and Reform Committee, that is chaired by Congressman Burton. On the subject of IRBs: A System in Jeopardy, we provided testimony. That testimony is available on the NBAC website, as well as testimony from all others who were presenting at that meeting—at that hearing. Shortly after that hearing, legislation was introduced by Congressman Townes of New York, which would require the tracking of research involving children and other persons with mental disorders. Staff will continue to follow that proposed legislation. Third, and this is I think well known to everyone in the room, we have a report on research involving subjects with mental disorders that may affect decisionmaking capacity now in a Commission draft form. It was put on our website a week ago, made available to Commissioners, and sent to about 114 individuals and organizations around the country, who represent a diversity of views and opinions—from scientists, to advocacy groups, to other organizations—in the hope that the input that we will obtain will improve the quality of our report in general, and also demonstrate our profound interest in having public comment. I'm also pleased to report that we have now sent out our requests for protocols and consent forms, a project that we have been hoping to have completed for some time now. We have sent out about 73 letters requesting protocols and consent forms. I am delighted to let you know that Alex Capron and Jim Childress, who initially proposed this idea, as well as Trish Backlar, have agreed to work with staff to form a small working group to look protocols and consent forms, and to provide some summary material to the Commission when they are completed. Obviously, we will not complete the Commission draft on—or the final report, rather, on incapacity until that summary has been completed and the Commissioners have had a chance to review the materials. If all goes well and there is a positive response and the work can be completed, we'll be able to report back in advance of the September Commission meeting. Finally, this was alluded to in Senator Hatfield's kind opening remarks, the Commission was made aware many months ago of the International Association of Bioethics meeting in Tokyo this November. We have now been involved in helping to develop an agenda for the — now the second International Summit of National Bioethics Commissions. Alex Capron has been instrumental on the Commission's side in helping to put that agenda together. So, Dr. Shapiro and his colleagues, co-chairs from France and Japan, Drs. Changeux and Imura, will be co-chairing that session. An agenda is available on the outside table, and is also available for Commissioners. The last item was really just an information item for you, apart from the many staff memos that we provide to you. But Debra McCurry, who, as you know, is on our staff and provides resource and informatics knowledge to us, passed me a note before I left. I just want to read you a portion of it, as it relates to the cloning issue. It is that the May issue of the Library Journal published by the American Library Association has issued its annual choice list of "notable government documents." The NBAC Cloning Report is included in that list, although this is a transcript and there isn't a video response I have it in my hand. I can confirm this with a star, "Notable Government Documents: Coverage from Culture to Cloning." So, we made the "A" list of the American Library Association. On that note, I will just remind Commissioners that the Cloning Report that you completed last June, which was so popular that we ran out of copies, and we also noted a few editing changes that needed to be made, is now in the publication process, and we'll be reprinting 10,000 copies. They will be complete within the next—we're hoping within the next week to ten days, or two weeks at the latest. The Commissioners will obtain copies and we will make them available to the public. It is already available on our website, and any altered version of an editorial nature will also be put on that website.

DR. SHAPIRO: Thank you very much. With respect to being on lists, so if you'd like to be on a list, I usually like to be on a list until I see who else is on the list. So, we'll have to take a look at some of those other documents on there as well. But in any case, thank you very much. Any questions for Eric? Alta.

MS. CHARO: Eric, on the Cloning Report. I have had, on a number of occasions, people ask me about the Commission Papers. I have told them that there are plans for those to be published as an appendix. Is that going to be published with this version that's coming out in a week or ten days?

DR. MESLIN: Yes, exactly.

MS. CHARO: Thanks.

DR. MESLIN: There are three volumes to the Cloning Report. The Executive Summary, the Report and Recommendations, and then the Commissioned Papers, which is a third volume, and all three are being reproduced.

DR. SHAPIRO: Thank you very much. Any other questions? All right. A good part of the afternoon today is going to be spent hearing from a number of distinguished guests that have very kindly agreed to join us this afternoon and share some perspectives with us, which I think will be important. All of us—and I want to express my gratitude to each of them for taking time from busy schedules to be here with us in Portland. I will introduce them separately as we hear from them, rather than do this all at once. The first of these is Albert Jonsen, who is, I think as everybody around this table knows, a pioneer in this area. If there are pioneers, he qualifies, and has been around in bioethics in this country as we understand it today, and has been a key figure in its development for now some considerable number of decades. I had a chance not too long ago—I guess it was last January in Madrid, to share a seminar with him. At that time and as always, came away very impressed with his perspectives and the contributions made to the discussions. So, Al, it's really very nice of you to be here, and thank you very much for coming down from Seattle. We appreciate it. He's going to be speaking to the Commission on the birth of the Belmont Report of bioethics in this country. And as you did distribute some material to the Commission with the—Al, I'd like to turn the microphone over to you. Thank you very much for being here.