CLOSING REMARKS
                       THOMAS MURRAY, Ph.D.
     DR. MURRAY:  We have a few minutes left.  We have to decide
what we are going to do tomorrow in our roughly two and a half
hours that belongs to actually us.
     I think we want to--  Let me just tell you some of the
things I think we ought to do, and then I am looking for guidance
as to how we should, who should sort of take the lead to present
the various components.
     We should explain how it is that we came up with this notion
of research conducted in an anonymous manner and how that differs
from the prior idea of "anonymized samples." 
     Are you with me on that?
     DR. SHAPIRO:  I think that is a really critical issue for
the entire commission to understand so I hope whoever does it-- 
I hope you will--
     DR. MURRAY:  Do we have a volunteer who wants to explain
that idea?
     (No response.)
     DR. MURRAY:  I mean the option is, if we don't have a
volunteer, is either I appoint somebody to do it, or I do it
myself.  I guess it depends on how generous or self-flagellatory
I am feeling at that moment.
     As you know, our fellow commissioners are fairly bright
folks who are not inclined to take things on faith, so be
prepared to defend any position that you are representing us on. 
Because that is one thing I think we absolutely need to do.  We
need to present the boxes.
     DR. COX:  I nominate you for that one, Tom, because I think
you would do a great job.
     DR. MURRAY:  Oh, thanks a lot, David.  Okay.
     We need to do the boxes and explain.   I think we could do
it historically--in so how we started out with so many--but that
is not really the best way.  Let us just talk about the ones we
have and why we feel they make sense, and capture the
significant, some dimensions at least of the problem.
     And Zeke is not here.  
     DR. HANNA:  He will be here tomorrow.
     DR. MURRAY:  He will be here tomorrow.  Eric is willing to
talk to him this evening.  Is that right, Eric?
     DR. MESLIN:  Yes.
     DR. MURRAY:  I think my inclination would be to ask Zeke to
conduct that part of the presentation.  How do you feel about
that?
     DR. MESLIN:  And just as a point of clarification, that part
would be his corrected original form that you didn't get today
that he regretted he was unable to provide, plus the amended
boxology--the reducing the three rows to two--so that the full
commission would see what had originally been discussed and what
had been agreed to.
     Zeke actually wasn't here when you agreed to that, but I
will, with your advice and consent, encourage him to be pleased
to present that, having not been here for the presentation.
     DR. MURRAY:  I am going to suggest we not call it a
"boxology."  It has a--
     DR. SHAPIRO:  People have been using matrices for years and
we are the first ones, as far as I know--  Maybe Kathi or
somebody came up with that.
     DR. MURRAY:  Let us call it a matrix.  I mean, boxology has
a faintly theological and even derogatory tone--
     (Laughter.)
     DR. MURRAY:  No.  I mean, some people might think of it as
derogatory and I don't want to get into that.  It is a matrix. 
That is all it is.
     We think we should talk about the community consultation
idea.  That is a key idea.  
     Now, the Human Subjects group has been talking about this as
well, I take it, so it won't come as--is that true?--it won't
come as a complete shock to them.  But I would be very grateful
if Bernie would take a few minutes and just lay out some of our
thoughts about that.     Is that--  How does that strike you?
     I think the firewall issue--  The concept of a firewall, a
one-way wall, will come up as Zeke talks about his matrix.  The
issue we were just trying to resolve, I think not fully
successfully within the past half hour, is a substantial one.  
     I don't see any--  I don't see it as a bad thing if we
simply lay out that we are having this conversation about when,
if ever, or should we create an impenetrable firewall, or should
we permit certain rare exceptions?  If we couldn't just in fact
put that before the full commission and ask for their input as
well.     Because I don't think there is anything--  Not only is
there nothing wrong with that, there is actually some advantage
both in terms of they may have some ideas that we haven't thought
of, and also it will involve them in a constructive way in
helping to shape the report.  So I would be in favor of doing
that.
     Is that suitable?
     Are there other central elements--features--that we must
specifically address tomorrow morning?
     DR. SHAPIRO:  Tom, it is not a direct answer to that
important question, but in terms of the firewall, when it should
be penetrable, if ever, and so on--that whole set of issues--I
think it would be helpful if one could spend some time
understanding whether being unable to penetrate it would put you
in an ethically indefensible position.  
     Quite aside from the examples that have been given here, it
seems that we need to understand whether, if you took the extreme
position, which I am not suggesting for the moment, but it would
really be helpful to understand if you could define an ethically
indefensible position that would lead you.
     So that is really an assignment for some future moment when
we could discuss this.
     As I look--and perhaps this is part of what you anticipate
as Zeke's presentation tomorrow--that is, the current matrix of
possibilities shows that consent is not required for some, under
certain circumstances for the retrospective samples; that is, the
far-left row.  
     And I just want--  I think it is important the commission
understand that.  I am not--  That seems fine to me just myself,
but it is just I think quite important that Zeke outline that,
draw their attention to that issue.
     DR. MURRAY:  Yes.  
     As we talk about this, sort of the pro and con of whether to
ever breach the firewall, lots of people were very articulate
about it.  Two in particular I thought were Trish and Larry.  
     Would the two of you be willing to just sort of present, you
know, without necessarily, you know, feeling cemented into the
position, to presenting the view, A, I mean, of Trish's view that
it might be desirable to permit it and Larry's view, from a
policy standpoint.  
     Would the two of you be willing to sort of set the debate
off for us on that?  Okay.
     I think we have the four essential elements.  There is a
fifth which we could integrate into Zeke's presentation and that
is the idea, which I thought was a very good one, about how--going forward from here, in the future--how we would deal with
the issue of consent.
     And, as I understand it, the way we would deal with it is
to, you know, have a consent.  We are going to talk about the
features, et cetera, without giving a model form, but we are
going to say that, in terms of the process, it seemed to us to
make sense to have a consent more or less at the time of tissue
donation.
     And if someone chooses not to consent then and there,
obviously they are out.  
     But for people who do consent then and there, we also send
them, or give them, to be sent back within a couple of weeks, if
they change their mind and they want to remove their tissue from
the research pool, they are going to be permitted to do that.  
     So it is you must have a positive consent, plus people get a
second opportunity to change their mind.  Is that--  Is that how
you recollect our discussion about that?  We should at least
mention that.
     Carol?
     DR. GREIDER:  In this presentation that you are saying that
Zeke is going to make about the matrix, are we going to have him
go through and discuss what we have suggested as how we would
fill in that matrix?
     DR. MURRAY:  Yes.
     DR. GREIDER:  And in doing so discuss with the full
commission what we believe each one of those ought to--
     DR. MURRAY:  I think we have to.
     DR. GREIDER:  Sorry.
     DR. MURRAY:  Yes.  Without spending two hours on each of the
boxes, yes, I think we have to.
     DR. GREIDER:  Right.  Because in the past, when Zeke has
presented that, first we focused on should this be the matrix
that we are discussing?  Do we have the right categories?
     DR. MURRAY:  Yes.
     DR. GREIDER:  And I would certainly prefer if he says,
"These are the categories that we have come up with.  These are
our reasons."  But then go through with the commission and say
what the different suggestions would be in each one of those.
     DR. MURRAY:  Yes.  I mean, I think you are right.  We have
made the jump from are these the right categories to these are
the categories we are working with now and here is how we plan to
fill--
     (Simultaneous discussion.)
     DR. GREIDER:  So first maybe just discuss that?
     DR. MURRAY:  Yes.  It is important--  I mean, I am sensitive
to the fact that people in the audience may not have had copies
of the matrix to look at when we are talking about 1a, 2b, you
know, et cetera.  Let us make sure we have a transparency, or
some way to show the people what we are talking about, and not
just the commissioners.
     MS. BACKLAR:  So have them make 2 and 3, 1?  I mean, not-- 
No, no, no.  I don't want to confuse things.  One is 1.  Two and
three are--
     (Laughter.)
     (Simultaneous discussion.)
     MS. BACKLAR:  Yes?
     DR. GREIDER:  One and two and that is it.
     MS. BACKLAR:  Good.  Okay.
     DR. GREIDER:  Right?
     DR. MURRAY:  There is individual and there is community,
right?
     DR. GREIDER:  Right.
     DR. SHAPIRO:  Carol, if this weren't a Genetic Subcommittee,
we could call the boxes "cells."
     DR. GREIDER:  Ahhh.  Okay.
     DR. MURRAY:  All right.  Anything else urgent that we need
to do today?
     (No response.)
     DR. MURRAY:  No.