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Oral History of the

Belmont Report and the

National Commission for the Protection of Human Subjects

of Biomedical and Behavioral Research

Interview with

Karen Lebacqz, Ph.D.

Robert Gordon Sproul Professor of Theological Ethics (Emeritus)

Pacific School of Religion

Berkeley, CA

October 26, 2004

Belmont Oral History Project

The Tower Building • 1101 Wootton Parkway • Suite 200 • Rockville,
Maryland 20852 • (301) 496-7005

INTERVIEW

*Interviewer: LeRoy B. Walters, Ph.D., Professor of Christian Ethics and
Professor of Philosophy, Kennedy Institute of Ethics, Georgetown
University.*

MS. LEBACQZ: I am Karen Lebacqz. I was a Commissioner on a National
Commission for the Protection of Human Subjects of Biomedical and
Behavioral Research. I am Robert Gordon Sproul Professor of Theological
Ethics Emeritus now, at Pacific School of Religion in the Graduate
Theological Union.

*INTERVIEWER: It\'s been some time since the Belmont Conference and you
and I both had the privilege of being at the Belmont Retreat Center for
that conference. It\'s hard to remember a lot of details, but I\'m
wondering whether you recall how we came to the idea of three principles
of beneficence justice in respect for persons?*

MS. LEBACQZ: I don\'t remember this specific conference as well as I
remember the work that led up to it. And, I think, my memory would be,
that these three principles emerged out of our ongoing work. That when
we struggled with research on children, we looked carefully at issues
around beneficence and non-maleficence.

When we struggled with research on prisoners. One of the big issues that
emerged was about justice and how you can take a vulnerable population,
such as prisoners, and ensure that they are treated fairly given the
total institution in which they reside. So, I think the three principles
came in part out of the kinds of issues that we had been struggling with
as we looked at research on the fetus, research on children, research on
prisoners and the other specific populations. Do you mind if I just sort
of take off on some of these questions?

*INTERVIEWER: No, I don\'t.*

MS. LEBACQZ: Okay.

*INTERVIEWER: One of the three Belmont\'s principles is respect for
persons. And, I believe that you Al Johnson may have had something to do
with the inclusion of that principle. Could you say a bit more about
your work on respect for persons.*

MS. LEBACQZ: In my way of thinking, the principle of respect for persons
is absolutely crucial. And, it is the number one principle. And, it
needs to be framed in the language of respect for persons. My memory is
that we did struggle at Belmont over what to name this principle. And, I
suspect that it was Al Johnson, and perhaps several others and I, who
argued that we should use the language respect for persons.

Part of the reason for that is that we had a history of some research
that was very disrespectful of persons. The Tuskegee Syphilis Study,
some of the early work that had been done on birth control using women
from other countries who were never given an opportunity to consent. Did
not know that they were participating in research.

So, we wanted a principle that would require that people be from the
outset, respectful of all the subjects who would be participating in
research. In subsequent years the principle respect for persons became
in the work of Beauchamp and Childress. Their very famous book on
principles for biomedical ethics. That principal became a principal of
respect for autonomy. And, it\'s my personal view that that is
unfortunate. That respect for persons is broader than respect for
autonomy.

Autonomy, the capacity to make ones own decisions is surely an important
part of what it means to be a person. But, it is not the only part.
Children are persons even though they are not autonomous. So, the
principle of respect for persons needs to include dimensions outside of
autonomy. And, I would argue for the integrity of the language that the
National Commission used, and I think it is the better language.

*INTERVIEWER: There was a book published in 1970 called, Respect for
Persons, by Downey and Telfer. Did you use that book in your own
teaching or had you read that book as you entered into the Commission
Deliberations?*

MS. LEBACQZ: Yes, Al Johnson and I had teamed taught a course in ethical
theory. And, we used Downey and Telfer\'s book, Respect for Persons, as
one of the text for that class. The book is really an effort to spell
out what a continuum perspective on ethics requires. And, it is quite
strong on an understanding of what respect for persons means. And, in my
view, sees that as going beyond simple respect for autonomy. Though many
people do take comps ethics to be rooted in the concept of autonomy.

*INTERVIEWER: The Commission came up with three principles and you\'ve
now had more than 25 years to think about whether three is the right
number. Can you think of other principles that you would like to add to
the three in light of your thinking in the mean time?*

MS. LEBACQZ: If I could go back and do it over again, would I do some
things differently? Probably. Though, I think what we did at the time
was good for its time. Would I add principles? I don\'t know if I would
add principles so much as I would try to spell out better than we did
the inner meaning of the three principles that we had.

For example, I really do believe that respect for persons needs to
include a kind of subprincipal of respect for a persons community,
respect for the embeddediness of people in their cultures, and so there
are ways of getting respect for culture into the principle of respect
for persons. That\'s one that I would like to see either added or at
least elaborated.

Similarly, we talked about justice and we talked about it primarily in
the language of equal treatment and protection of the vulnerable. A
language that we did not use in those days but that that has become very
prominent since and very important to me, is the language of oppression.
I think there is a difference between populations who are simply
vulnerable and populations who are oppressed. And, justice requires
rectification of oppression and that might set some structures
differently than the way that we did so many years ago.

So, if I were doing it over again, I would not deny any of the
principles that we used, but I would want them extended and expanded.
And, I might have additional principles that I would want to lift up as
well. I believe that human life is relational at its core. And, perhaps
a principle of covenant or promise keeping would also have been an
important part of respect for persons, or maybe even an additional
principle.

*INTERVIEWER: In your own work since your time on the National
Commission, the principle of justice has played a very prominent role.
Justice between genders, justice in ones ethnic groups, justice between
the first world and the third world, are the ways in which you would
like to see then the notion of justice enriched.*

MS. LEBACQZ: Absolutely. When the Commission did its work, I think we
were perhaps on the forefront of identifying justice as an important
principle. But, even in the Belmont meetings and in our struggles with
the Belmont document, we were never able to spell out fully what justice
would require. A good bit of my own work since then has been grappling
with this difficult principle of justice and trying to determine what it
does require.

And, as I\'ve already indicated, I would see a crucial question today as
the question of oppression. In part of what was so disturbing about the
Tuskegee Syphilis Study is that it was not only a study that was done
without the informed consent of people, that alone would be bad enough,
but it was a study that was done on an oppressed group of people who
were taken advantage of because of their oppression. And, that kind of
exploitation is absolutely anathema.

So, justice requires not simply treating people equally, we could treat
everybody equally and still be oppressing all of them. Justice requires
attention to power issues, how to redress the power in balances in life.
Some of my own work on justice has involved looking at what it means to
acknowledge that we have made mistakes, or done things that are wrong,
and that we need to rectify those. What is reparative justice, for
example.

So, from my perspective, the Commission really did a great service to
the field of bioethics by lifting up the principle of justice. But, we
did not give a full enough account of what justice would require. And,
there is a great deal more work that needs to be done on that.

*INTERVIEWER: Well, let\'s move from Belmont back to the beginning in
the early months of the Commission\'s work. The fetal research topic was
the first one on the agenda. How did you experience your work with the
Commission beginning with the first meeting? I mean, what was it like to
come into the room with this group of people, and you probably only knew
a few of the people in the room, and how did you experience the work on
the fetal research report?*

MS. LEBACQZ: I was very young and very naive, and I honestly did not
know what I was getting into when I agreed to serve on this Commission.
My memory of those first months was feeling overwhelmed by the enormity
of the task that we had been set. Very grateful for the wisdom of the
group in choosing Ken Ryan to be our chair. And, enormously grateful to
the Commissioners as a whole for the respect that they had for each
other and for me as very young and relatively unseasoned person in the
field of ethics.

I have several early memories that are very strong. One was how
difficult it was for us to talk to each other in those first meetings.
We were giving four months in which to come to a conclusion on what has
to be one of the most difficult topics ever. It remains a controversial
topic with a current controversy around stem cell research. In those
days it was not stem cells but research on embryos and fetus\'s.
Certainly one of the most controversial and divisive of our topics.

And, I remember that it took us almost four months to develop a common
language so that when the scientist talked, the rest of us understood
what they were saying. And, when the lawyers, talked the ethicist
understood what they were saying. And, I still remember that Al Johnson
and I as the ethicist on the Commission would say something on the order
of, that\'s not a morally relevant difference.

And, after about three months of this, I forget who it was, but I think
maybe one of the scientist, finally thumped his fist down on the table
and said, you keep using this phrase, morally relevant, and I don\'t
know what it means.

So, just finding a common language and being able to understand each
other at the beginning was very difficult. We were diverse in terms of
our academic fields. While most of us were academicians, and in that
sense, maybe not very diverse, we were certainly diverse politically and
in terms of our faith, traditions, and our convictions about the fetus
and the standing of the fetus.

So, trying to come to common ground was not easy in those early months.
I do remember one of my strongest memories of the Commissions work
overall, was how quickly Pat King, who was one of our lawyers on the
Commission, Pat King and I would hear a comment and both of our hands
would go up at the same time. And, Ken would call on one or the other of
us. And, we would look at each other as if to say, do you want to answer
this one or shall I answer this one.

And, so often we were trying to make the same point in spite of the fact
that her legal language and my language coming out of the field of
ethics were slightly different. So, I really felt early on that I had a
good colleague in Pat King. That she understood what I was trying to
say, and that if I had difficulty getting others to hear it, she was
able to step in and say it again in a different language that maybe
others could really appreciate it.

So, I have memories of both the difficulty of coming to common ground
and the difficulty of talking with each other. But, also of the great
respect of Commissioners for each other, of our efforts to assist each
other, and particularly for me, having come into it relatively
unseasoned, a tremendous gratitude to my fellow Commissioner\'s for the
respect that they showed to me.

*INTERVIEWER: Do you feel a sense of general satisfaction about the
fetal research report when you look back on it even though it had to be
put together so quickly?*

MS. LEBACQZ: It was our first report and it was not, I don\'t believe,
our most controversial report interestingly enough. One of the things
that we did that made a difference to our work was to bring in a number
of scientist very quickly to talk to us about fetal development. So,
that we were trying to do our ethical work based on as careful
scientific knowledge as we could attain as lay people. So, I think that
set an important precedent for the work that we did overall.

Am I satisfied with the report? Given the constraints under which we
worked, I would say yes. Would I do some things differently today, yes.
I think we know some things today perhaps we did not know then. I have
since learned, for example, about the zona pellucida which I did not
understand or know anything about in those days.

The question of whether that very early embryo is simply a collection of
cells being held together in a kind of sac if you will, or whether it is
already an integrated organism. That could make a significant difference
for how one goes about doing ethics for early embryos. And, I did not
know anything about that in those days.

So, perhaps I would do some things differently. But, overall I was
pleased that given our differences on the Commission, given the
constraints of time and the difficulty of learning a common language, we
were able to come to a report that was amazingly united I think under
the constraints.

*INTERVIEWER: How important do you think it was that the Secretary at
that time of Health, Education and Welfare had to respond in some way
within a 180 days after a report and recommendations were submitted?*

MS. LEBACQZ: Terribly important. Subsequent commissions or counsels on
bioethics have often been simply advisory. And, the problem with being
an advisory, Bobby, is nobody has to take your advice. You can
promulgate good ideas, but if there is no structure that requires that
they be taken seriously, they can simply be ignored.

The difference in part for the National Commission on which I had the
privilege to serve, was this law that brought us into being that
required that what we proposed had to become rules and regulations
unless there was good reason not to promulgate it. The Secretary of then
DHEW was given a specified amount of time in which to publish our
recommendations and seek responses. And, then if the Secretary departed
from what we recommended, the Secretary had to explain why.

So, throughout the process there was a kind of bite about our
recommendations. They either had to be turned into law, or there had to
be good reason that they weren\'t turned into law. And, those reasons
had to be communicated publicly in a way that was widely accessible to
everyone. And, I think the public reasoning process was terribly
important part of our process, both in terms of how we went about trying
to formulate our recommendations, and also in terms of what then
happened with the recommendations.

*INTERVIEWER: As you look at all of the reports that the Commission
produced, is there one or are there two that stand out in your mind as
the best work that you ever did?*

MS. LEBACQZ: I think my favorite of all the Commission\'s Reports would
have to be the report on prisoners. First of all it was for me, a
tremendously important learning experience. The Commission went into a
number of prisons. We went into minimum security and maximum security
prisons. And, it was, I confess, the first time that I had ever set foot
inside a prison. We interviewed prisoners. We heard their stories. We
saw the research quarters where research was being done on prisoners.

And, on one occasion we went to Jackson State Prison, which is maximum
security, and the Commission was absolutely determined that we would be
able to hear from prisoners without them being put at any risk. So, we
insisted that it be only these prisoners, who most of whom were in for
murder. They were either life long prisoners, or had many, many years to
go before they would be paroled. We insisted that in the room there
would be only the prisoners and the members of the National Commission.
No guards allowed in the room.

I\'m amazed in retrospect that we were able to accomplish this. But, I
will tell you truthfully, it was one of my most life changing
experiences. As I sat and heard prisoners talk to us about their
stories, why they were there, they admitted freely they had murdered
someone, or done armed robbery, or whatever it was that had brought them
there. And, then we talked with them about the research unit. It was the
only time in that entire day that I felt safe.

The rest of the time we walked around the prison grounds with guards
with guns trained on us. The only time all day that I felt safe was when
I was outnumbered by a whole bunch of convicted murderers and hard-timed
felons. I had day mares, not just nightmares, but day mares for months
afterward. Visions would come back to me of how horrible the conditions
were for the prisoners there.

So, we were determined that these people who live in a total institution
where they have very little control over anything, should be treated
with great respect if they are to be subjects of research. Many people
thought we should simply ban all research in prisons. But, the prisoners
themselves said, the research unit is the best place to be in the
prison, that\'s the place where we get treated as though we are human
beings.

So, instead of banning research, what we tried to do was set
requirements so that in order for research to be done in a prison, there
could not be such terrible conditions in the prison that being part of
the research project became what we called an undue inducement. If it\'s
that much better in the research unit, then prisoners will want to get
into it no matter what the risk of the research might be.

So, we tried to not only keep the risks minimal, but also make sure that
the conditions in the prison itself would be such that there would not
be undue inducement for people to participate in research. I think that
was one of our most important recommendations.

The understanding that coercion is not just about somebody holding a
knife to you and saying you have to do this, but there can be something
coercive about making an environment so good compared to what the person
normally lives in, that they really cannot easily make an informed
decision about what they\'re doing.

So, for me the report on prisoners, is my favorite of our reports
because of the ground that I think we broke in that report, but also
because of the experiences that we had in order to do the report. And, I
could talk for hours about those memories for me are very, very strong
memories. Everyone of the prisons that we visited I can walk right back
into the corridors in that prison in my mind those memories are so
strong.

*INTERVIEWER: It\'s ironic that the recommendations of the report on
research involving prisoners were never translated into regulations.
That\'s a loop hole in the current oversight system. Are you
disappointed that that didn\'t happen?*

MS. LEBACQZ: Yes, very. And shortly after the National Commission had
come to a close, several of us were invited to go to a prison on behalf
of a drug company that was doing some research there. We were invited to
go and tell them whether we thought they could ethically conduct their
research.

Quite frankly, if the recommendations on prisoners had been promulgated,
it would have been very clear that they could not do the research that
they were doing. Not because the drug company was doing anything wrong.
Its research was very low risk, but the conditions in the prison did not
meet the minimum standards that we had laid out so clearly in our
report.

*INTERVIEWER: Research involving children continues to be a very
important and much discussed issue. As you look back on the report about
research involving children, what do you see as its strength and
weaknesses?*

MS. LEBACQZ: I said earlier that ironically I did not think the report
on research on the fetus was our most controversial topic. I think our
most controversial topic was the report on research on children. We had
the most difficulty in some ways coming to agreement on that report.

And, so, one of the things that we did there and elsewhere was to reach
a point where we said, we are not going to agree on this. Let\'s make
sure that minority voices can be heard. And, to put out a report that
included the majority report and then several different minority voices.

But, of the things that we did within the report that are important, I
think for me the notion that children beyond a certain age need to
assent to research even if they are not old enough to give an informed
consent. Saying, if they are old enough to understand that they are
participating in research, and why they are being asked to do that, then
they should have to assent to it. They should have some right of
refusal.

For me, that would be another part of the respect for persons. Children
are not autonomous. They can\'t give a fully informed consent, but they
should be respected enough to be given the chance to say, no, not
necessarily to medical treatment. But, when you\'re talking about
research, you\'re not talking about medical treatment, per se. You\'re
talking about the kinds of things that are done in order to allow us to
gather data. And, I think children beyond a certain age should have the
right to say no to that.

*INTERVIEWER: Let\'s look at the other side of the picture and that is
which of the reports was the most disappointing to you, or where do you
feel the Commission did the least thorough job?*

MS. LEBACQZ: One of the places where I think in general we were weak,
was that our model for almost all of our work was biomedical research.
We were a Commission that was supposed to look at both biomedical and
behavioral research. But, through almost all of our reports, we used the
biomedical model as our primary model.

So, I would say that we were weak at the point of really looking at some
of the very important kinds of issues that come up when you do
behavioral research, or when you\'re simply interviewing human subjects
about things. Are there particular vulnerabilities for people who come
out of populations that don\'t have a concept or a history of informed
consent.

For example, I have subsequently served on the Human Subjects Committee
at the University of California Berkeley main campus. Most of the
research that is done on that campus does not involve any biomedical
interventions. It is largely faculty and graduate students who want to
interview people or set up focus groups for discussion about issues such
as drug use or whatnot.

When you ask people to talk about their drug use, and you are in fact
asking them to share information that could potentially put them at
risk, we really did not deal with a number of those kinds of issues.
And, I think there are still significant questions like that for which
much more ethical analysis is probably needed.

*INTERVIEWER: Did you feel that right from the start the Commission was
totally independent of influence by NIH or the Department of Health
Education and Welfare, or do you feel that as if the Commissioners and
the staff had to fight for your independence early on and establish your
independence?*

MS. LEBACQZ: For the most part I think that from the very beginning we
were quite independent. I do remember at several early meetings where
staff had taken some of our discussion and attempted to develop rules
and regulations or to develop a report based on the discussion. And,
they brought it back to us and we got angry and said, you are
promulgating your own ideas. You are not reflecting the conversation of
the Commissioner\'s.

So, I think very early on, although in general we were very grateful to
our staff, relied on them heavily, and thought they were wonderful
overall. I think very early on we established a pattern of saying, the
work that gets done here will be the work of these Commissioner\'s, not
the work of anybody else.

And, we resisted any suggestion that we needed to capitulate to what
current practices were in any of the government departments. We really
saw ourselves as having been given a charge and a commission and taking
responsibility for trying to do that charge and that commission.

*INTERVIEWER: As I recall there was even somewhat of a change in the
staff in those early years, precisely in order to achieve greater
independence, for example, from NIH influence.*

MS. LEBACQZ: Yes, that is true. And, we were lucky always to have some
folks from NIH or other departments of the government who came and sat
through our meetings as observers. And, were sometimes very helpful to
us behind the scenes, giving us reflections on what they had observed as
they listened to us.

But, they were, I\'m thinking for example, of Natalie Redick, who at
that time was in the Office for Protection from Research Risk, I believe
it was called at that time. Who came, I believe, to every single one of
our meetings. And, was a very thoughtful observer, but did not attempt
to intrude or to sway the voices of Commissioner\'s.

We would have been a hard group to sway. We argued enough with each
other that there wasn\'t a whole lot of time for other people to have a
whole lot in put. Except for the times when we deliberately set up for
public in put and we did hold public hearings, and we asked some pretty
tough questions of the people who came and testified before us.

I still remember one man on his way out looking at me and saying,
you\'re a lawyer, aren\'t you? And, he didn\'t quite believe it when I
said, no, I\'m not. I think it was because of the kinds of questions
that we put to everybody.

*INTERVIEWER: The Commission met often once a month and then the staff
was working in between the meetings, but after your recommendations went
forward, there had to be some people in the trenches in the federal
government who would translate your recommendations into regulations.*

*I\'m thinking, for example, of Charles McCarthy, in the Office for
Protection From Research Risk. And, I guess my question is, how
important do you think it was that there were long term government
officials there who did their level best to translate your
recommendations into new regulations?*

MS. LEBACQZ: It was probably more important than I realized at the time.
At the time, I would have to say that I was so focused on the enormous
task that had been set before the Commission itself, that I did not pay
as much attention as perhaps I should have to the hard work that went on
behind the scenes from people who had to take our ideas and turn them
into the kinds of rules and regulations that lay things out clearly
enough for IRB\'s to be able to follow what is being required.

Certainly, I think all of us felt a debt to people like, Charles
McCarthy, who did that kind of work. But, at the time I was always
focused on the task that we had been given because they were so
enormous. We met once a month. I used to call it my 48 hour red eye
special. Would fly from California, usually overnight after teaching all
day, sit through two days of meetings, and then got on an airplane and
fly back to California arriving back late on the second day.

I started drinking coffee when I was a member of the National
Commission. I had never drunk coffee before in my life. Not even when I
was in college. But, by mid-afternoon on the second day I would be so
tired that I finally turned to caffeine to keep myself awake because all
of us were doing it as an extra job over and above a full time teaching
job. At least I was never given any time off for the work that I did
with the Commission.

We met for a formal meeting once a month. But, when we were doing our
reports on different population groups, such as people who were
institutionalized in mental institutions, or prisoners or children, we
also did a number of field trips. And, there were many months that I was
on the road two weekends out of the month doing the work of the National
Commission, either the official meeting or the site visit.

So, it was very, very demanding and my energy was going into reading all
the background materials that we collected. All the experts who wrote
papers for us on different topics to try to help educate us about the
kinds of research that were being done on children, for example.

*INTERVIEWER: At that time there was not electronic mail and I don\'t
think there were even fax machines. So, I guess all of the work of the
National Commission had to be done through mailings of paper documents,
is that correct?*

MS. LEBACQZ: Huge dockets we would receive every month before the
meeting. Usually a\--a few days before the meeting we would receive a
huge packet of materials. It might be as much as a 100 or even 200
pages. We were expected to read all of it.

Fortunately for me, the plane trip from California back to Washington,
D.C. was usually about a six hour flight. And, I would get on the plane
and read non stop until I got to the other end. So, yes, you are right.
I certainly had no email and no fax machine in those days. And, our work
was conducted by what we now call snail mail. And, there was a lot of
material to digest in between meetings. And, then it was hard on the
staff as well because they met with us over a weekend. So, normally the
days that they were supposed to have off, they would need to be working.

And, then in theory they should take several days off to make up for
that time, but in practice, if they were going to take what we did, and
turn it around, and get a draft back to us so that we would have a week
to read it and digest it before returning for the next meeting, they
pretty much just had to turn around and keep working non stop. It was
non-stop hard work for all of us those four years of the life of the
National Commission.

*INTERVIEWER: In terms of your own academic career, would you say that
your work on the National Commission sat an agenda for your work
subsequent to going off the Commission, or did you move onto other
topics since that time that sort of complement the focus of the
Commission?*

MS. LEBACQZ: The National Commission really did two things for my
career. First, because I was very young and not well known in the field
of bioethics, serving on that Commission catapulted me into the public
eye very quickly in a way that I think otherwise would have probably
taken at least ten years for me to achieve.

And, it also gave me connections with people in medical schools and
universities that I might not otherwise have had as I have spent my
entire professional career with just a couple of exceptions, several
leaves of absence, but the bulk of my teaching has been at a small
religiously oriented school that would not normally be the venue from
which you would think someone does bioethics.

So, serving on the Commission was a tremendous boost to my career and to
giving me a public presence that I might not otherwise have had. With
regard to the subject matter, I would say that for a few years after the
National Commission, I continued to be very active in doing work on
ethical issues around human subjects research.

But, one of the things that happened to me after the promulgation of
both the Belmont Report, and especially the Beauchamp-Childress Volume
on Principles for Biomedical Ethics, is that the field of bioethics
seemed to me to become captured by this idea that there are a few basic
principles and that the way to do bioethics is to take any subject
matter or any case study and simply take these principles and apply it.

After about ten years, I became quite disillusioned with that approach
to the field of bioethics. And, I withdrew from that field a bit. I was,
after all, teaching in a school where most of my students are going on
either to be clergy, or to teach in the field of religious studies, and
so I began to do a lot of work on clergy ethics and on professional
ethics more broadly. Not losing the importance of the principles and the
work of the Commission, but shifting direction a little bit into a
different field.

I finally came back with some energy into the field of bioethics when I
saw that the field itself had begun to expand the ways that we do
bioethics, and not simply be captured by principles, but begin to look
at ethnography and the importance of trying to understand a community
from the inside out in order to ask what is ethically acceptable for
that community, or look at virtue theory. So, that we look not simply at
what we should do, but ask questions about who we are supposed to be.

So, with the expansion of the field of bioethics that really began in
the mid to late 1980\'s, I began to feel that there was room in the
field for some new and creative endeavors, and particularly, with the
Human Genome Project and the importance of some issues in genetics, I
moved back into the field of bioethics and put more of my energy back in
that field.

*INTERVIEWER: Would you say that you\'ve always been a feminist
theologian, or a feminist ethicist, that you were a feminist at the time
of your work on the Commission and you\'ve continued that accent in your
work?*

MS. LEBACQZ: I remember the precise day that I became a feminist. It
involved a xerox machine at which I was standing doing some xeroxing of
materials for my class. And, one of the trustee\'s of my institution
came in, saw me standing there, presumed based on my gender that I was a
secretary, and handed me a stack of things with the request that I xerox
them. That got me to thinking about stereotypes and how we pigeon-hole
people and presumptions are made about women and who we are in the
world.

So, I would say yes, I was a feminist from early on from the early
1970\'s and certainly before the time of the National Commission. I do
think, however, that the work of the Commission does not reflect a
particularly feminist vent. For example, partly because it was not in
the law that brought us into being, but perhaps partly a fault to be
laid at the feet of the Commission.

We never stopped to ask whether women were a particularly vulnerable
population. Whether there needed to be any special rules or regulations
for research on women. So, although I was a feminist and I am fairly
sure that Pat King was a feminist at that point, partly because there
were only three women on the Commission, and I would say that our
colleagues by and large were not at that time feminist.

Though, I think many of them may have become since that time, I hope so,
but partly because of that and partly because of the specific tasks that
were laid before us in law. We did not focus on some issues that I would
today hope that we focus on taking a feminist perspective on research on
human subjects.

*INTERVIEWER: And, final question, since the National Commission there
have been several other Commissions and Boards that have had similar
roles. There\'s currently a President\'s Counsel on Bioethics. I wonder
if you would mind comparing the work of this early Commission with the
work of subsequent groups.*

MS. LEBACQZ: My feeling is that the National Commission so many years
ago was important and successful in a way that subsequent Commissions
have not quite managed to be. And, I\'m not sure why. I wish I knew. It
may be partly because the law that brought us into being did require
that our recommendations be promulgated, or if not, good reasons be
given for why not. Whereas other Commissions have been advisory and
published their reports, but the reports did not have any bite built
into them.

It may be partly attribute to Ken Ryan who was a superb chair. Who, very
early on, I think, made some very wise decisions about how to get public
input into the work of the Commission without that public input
obstructing the work of the Commission. It may have been that we were,
at that time, naive, all of us, we were new at this game, there had not
been other Commissions. And, so we just did our work as carefully and
seriously as we could. And, we we weren\'t so captured by some of the
politicization that I think has happened since then.

I think it is truly a tragedy that the most recent President\'s Counsel
on Bioethics lost two members whose terms expired and they were not
renewed. And, there is at least some evidence that that was a deliberate
political decision because of the positions that they took. I don\'t
think that would ever have had happened on our Commission. We were very
different politically. We had to battle it out with each other. And, so
there was a diversity built in and no effort to surround or overcome
that diversity by imposing a particular political view.

I worry that these bioethic commissions are increasingly considered
useless or are marginalized by people in the field of bioethics because
they have become viewed as instruments for political purposes. And, I
don\'t think that the National Commission was viewed that way. Certainly
the National Bioethic Advisory Commission did a lot of important work.

Promulgated some important reports, and they have entered into the
discourse of people who do bioethics. But, how much impact they have had
on the actual practice of bioethics is not clear to me. Whereas it is
very clear to me that the National Commission\'s legacy of impact on
practice in the field of Human Subjects Research has been enormous and
extensive over time. If I may add one concluding comment.

*INTERVIEWER: Yes.*

MS. LEBACQZ: I really would want to stress that I consider it a
privilege that I was invited to serve on that Commission. It was long
and hard work, and quite frankly, took a toll in some ways on the
remainder of my work. It was difficult for me to publish my own things
as a young scholar because the work of the Commission was so demanding.

And, it was very hard to have a personal life at all when you\'re on the
road at least two weekends out of every month for this particular task.
And, at least one other weekend usually went into reading all the
materials that we needed to read.

So, it took away from some personal agendas and goals, but it was a
tremendous experience. And, I had excellent colleagues and wonderful
connections that I retain to this day from some of the people who either
were on the Commission or served as consultants on the Commission. I was
lucky.

*INTERVIEWER: It is quite remarkable that the personal contacts have
remained and that there is going to be a reunion of so many of the
former Commissioner\'s. That there was a reunion in Milwaukee earlier
this year.*

MS. LEBACQZ: Yeah.

*INTERVIEWER: So, that is a wonderful tribute to the cohesiveness of the
group.*

MS. LEBACQZ: Yes, and we have made no deliberate effort to stay in touch
over the years. And, in fact, some of us had lost contact for some time.
But, then we rediscovered each other in one context or another. Pat King
and I, for example, had not seen each other probably in almost 20 years
when we found ourselves working together on a group that had been set up
by the Hastings Center.

And, as soon as we saw each other it was just like old days. Our hands
would go up at the same time, and we would look at each other, which of
us is going to answer this question. And it really was just like
reliving the Commission all over again. It was wonderful. So, thank you
Leroy.

*iNTERVIEWER: Thank you Karen.*

--END OF INTERVIEW--