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Friday, September 9, 2005


Session 7: Public Comments

Michael Houser and Susan Poland

 

We have two people who have asked to make public comment and if the Council members would be willing to sit without a break, we can have the comments and then leave.  Our two guests are first Michael Houser and the Susan Poland.  I remind the guests that you should keep your comments to five minutes or less.  Welcome,and Mr. Houser, if you'd please come to the microphone.

MR. HOUSER:  I want to read this, do my best.  First off, thank you, Dr. Kass and thank you for the Council.  And second, I'd like to note something from a bio that I've read of Dr. Pellegrino.  It's a quote which I'd like to paraphrase.  Something happened to him as a young man.  "Substantiate your point.  Whatever you freely assert, I freely deny by the same loose argument," is what I'd like to note. 

Two Protestant boys, my brother and myself, got the same lecture or sermon from their father.  His sermon was very short.  "Know whereof you speak."  He never told you where the quote was from.  It was yours to find.  But basically eventually I found it and it was from Paul in his Mars Hill apologetic.  I leave it at that.

I'm not here to lecture, debate, so I'm going to just be brief and I'm going to try and cover a couple points.  My purpose in coming here is two-fold; to observe the Council in person versus read a flat transcript; you're quite impressive, all of you.  And the second thing is to state that an assumption of surplus embryos through IVF is not a given.  I'd like to cite John Biggers, Dr. John Biggers, "When to avoid creating surplus human embryos." [Human Reproduction 2004 November 19 (11): 2457-9]

And I've given that abstract to Diane. 

Related to this point, I'd like to say something on informed consent and I'd like to say it as a dual citizen, Ireland and the United States, and that many things that are said here really effect the world. So I'd just like to remind the Irish Medical Council that their ethics guidelines are clear.  a physician must state alternatives as well as benefits and risks of a procedure.  Informed consent is not just a signature. 

And lastly on what you've been discussing and more or less getting with the program as it sits now, I'd like to not perhaps comment on Richard Selzer but I'd like to note something on page 247.  He says, "What would you do on the last day of your life?"  Well, we're all going to get there.  Unfortunately, my father passed away on this very evening six years ago.  And I'd like to read a poem that my parents liked and I think it comes from the perspective of people enjoying life in Tucson and so I'll just get to it.  It's called a Pueblo Indian Blessing. 

"From seeds we sprout and blossom, we give forth our fruit then go onto life end.  That's how it is."  I should say that's how it's always been.  "Endure the storms, thrive in the sun, breathe deeply and be grateful for your life". 

I can't do better than that, so I want to thank everybody and hopefully, I've said something important.

CHAIRMAN KASS: Thank you very much, Mr. Houser.  Appreciate that, thank you very much.  Susan Poland?  Welcome back, nice to see you again. 

MS. POLAND:  Hello.  I'd like to congratulate both of you, Dr. Kass on a job well done and Dr. Pellegrino on assuming the mantel.  I'd like to make two comments generally, one on bioethics and one on public — going out to the public today. 

With bioethics, I think this Council has done an outstanding job on putting bioethics, on enriching it by putting it in context both with the literature and with using the national bodies that you had people come and testify.  I had not seen that in any other group.  That being said, recently in the June issue of the Kennedy Institute of Ethics Journal I wrote a short piece on bioethics, biolaw and western legal heritage which actually shook my faith in bioethics looking at what was happening in Europe and looking at ours.  And to that extent, I will agree that you should look at non-Western systems, particularly China, which has Confucian values with the Communist system and how that interacts.

And then still under bioethics, I recall Francis Collins at a meeting that we went to talking about why is the National Human Genome Research Institute the only one that's looking at ethical, legal and social issues?  Of course, everyone knows it's because of James Watson putting that in.  This Council, because it is national, is in a unique position with the Executive Branch, to recommend to the President that all agencies and departments look at the ethical and other issues of their department, particularly in light of the fact that with us working at Georgetown with the National Library of Medicine Grant, we're confined to medicine and medical ethics and such.  We really don't have the funding nor the mandate to look at genetically modified food or anything else along with that, the animal research and stuff.  And so I recommend to the Council that you consider doing that. 

My second area has to do with the public of which I've been one here in many of these meetings and I will congratulate you because you probably situate your meetings the best for public transportation.  Given that they're in Washington, that really helps but usually that's what you do maybe unconsciously.  And when you do want to look at reaching out to the public, I want you to consider whether you want public presence or public participation or both.  One of the positions that I fill is with Case Western Reserve University because they are now a Center for Excellence in Ethics and Research and under them, they pay for some of my time to go around to different meetings. 

So some of the meetings in the last year that I've been going to do very well with reaching out to the public, I think, and things that you could consider in modifying here.  One is the Secretary's Advisory Council on Genetic Health and Society.  Sorry, I have to read these acronyms.  What they do is they actually have panels come in of public.  They had a very moving one which is the most moving panel I've seen yet, is a group talking about genetic discrimination that these people actually had experienced and it was probably some of the most moving testimony I've seen since I've seen Jesse Gelsinger's father testify to Congress.

They also web cast their meetings, which would get this — it's better than a flat transcript but it really is not as good as seeing you in person, but it will get out to other countries.  The other one which does a much better job in some different areas is the Secretary's Advisory Council on Human Research Protection and they, right now, are looking at revamping the CFR and one of the areas is children.

They've been discussing a lot about what to do with well children, sick children, what are risks, what are limits.  So in your future, I would suggest looking at them.  The thing that's distinctive about them is that when you walk into their meeting room and they meet regularly in Alexandria, the other one meets regularly in Bethesda, they do not sit in a circle away from the public.  They sit in two sections of halves and those members are there and there's a podium in the middle and behind each half there's a screen so that nobody in the room is having a problem because there are two screens facing at angles. 

So you have the public back here but I was taken back because the room was practically full and I couldn't find a seat.  Why?  Because they have a whole group of ex officios so they don't just have people that are from around the country, but they  have people within town, they're actually assigned there with different departments which surprisingly because one of them is the CIA, because they wanted to create harmonization rather than be a conflict and them slow down their work.

I don't know if your ex officios would be congressional or it would be judicial members or where you would pull them from, but that made a lot more participation because they could ask things throughout the meeting and get some immediate response.  They also meet outside of the regular public meetings so they know what they're talking about.  There's one person assigned that meets with them. 

The screens and the setup I talked about so the public feels like they're already part of the process because the podium and they're talking more to the public.  And these people are around here taking notes and of course, typing.  I, myself, am paid to monitor these meetings, not just for Case Western, but for the other three Centers for Excellence because National Institute of Health, the Institute that funds us, is watching to see how well we collaborate.

And lastly is public comment itself.  Public comment with that particular group one of the more interesting sessions the man that was the head of a med school, I believe, from the Midwest, had flown out and was appalled at what they were doing about adding more and more layers that they never even get to when they're looking at doing research.  And he was frustrated with that, but he was also asked to have public comment in the middle because his schedule did not allow him to wait until the end of the meeting two full days.  And so this group had always had public comment at the very end.  I'm always witnessing people leaving and such.  I would like to see public comment more — and that goes back to my original comment about reaching out to the public. 

It's not just going around and doing a road trip but it's the question of do you want presence with the public or participation?  Thank you.

CHAIRMAN KASS: Thank you very, very much.  I'll say only one tiny thing, I'll say two things.  One, I'm glad for Dr. Pellegrino that he has these comments at the start.  I could have used them earlier because some of them are really very, very fine suggestions.  One comment just on the shape of the table; that was my doing and my doing based upon having been a presenter at NBAC and other such meetings where you have the August people sitting here and the audience out there.  It runs the risk of being theater.   It runs — especially in Washington with hot issues like this, when there are people out there scribbling, I would like to create the climate in which we try to pretend that we're not — we don't have to somehow trim what we have to say because there's somebody out there who might take it amiss.  So that we should try to have the kind of conversation — don't take this in the wrong — as if we were the only people in the room, not because we don't care about who's here and participating but because I don't want the conversation to be distorted by posturing and by theater and by a worry about the press.

So to produce a kind of more intimate setting, where people might forget and in fact, have a much more honest conversation, that was my insistence and that it produces a greater distance, I understand, and there are other ways — there might be a way of trying to do both, but with these delicate topics and lots of people afraid of saying something, I would like them to be as little afraid as possible.

MS. POLLARD:  That's fine.  If you could just also put a map out.  I mean, some of them have it and if you sit regularly, you start knowing people's voices, so I know people sometimes a lot more from the back of their heads than the front, but one of the groups would have a map saying who's sitting around that table and who's at what chairs because it is — while they're nice looking signs this time, they are harder to read. 

CHAIRMAN KASS: Thank you very much.  Look, the hour is late.  We're just about ready for adjournment.  Let me simply say very briefly on the record, first of all, what a privilege it has been to have served as Chairman of President Bush's Council on Bioethics.  For a first generation child of American immigrants to be given this opportunity to serve is just a great blessing.  To be able to serve in the company of such thoughtful, serious, public spirited and by and large collegial and always, always respectful colleagues, it's an experience for a lifetime and I will treasure these days always.  I'm happy to say that it's not fare well and au revoir and I look forward to sitting not in this seat but with my back to the audience if Ed will continue to keep this arrangement. 

Thank you one and all. Godspeed and we will meet again under new and vigorous leadership.

PROF. GEORGE:  Leon, I don't want to steal your thunder here but this is going to be probably the only chance in my tenure as a member of this Council to say I speak on behalf of every member of this Council and I want to say on behalf of every member of this Council, thank you, not only for your leadership but for the example of integrity, humanity and, indeed, nobility that you've set for us all and for the nation.  Thank you.

(Applause)

CHAIRMAN KASS: Thank you and we are adjourned.

(Whereupon, at 12:04 p.m. the above entitled matter concluded.)


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