1995-04-09: Test Tubes and Town Halls: The Role of Public Participation in Science

Vol. III, No. XV

Transcription:

Doris Zallen, VPI
Brian Balough, UVA
Test Tubes and Town Halls:
With Good Reason
Volume III, No. XV
The Role of Public Participation in science
Music
Tease
Corn plants, geneticly altered to keep away pests. Human eggs
fertilized in test tubes, tomatoes that don't get squishy. Is
science moving too fast without public input? I'm Carolyn
Elliott, this is With Good Reason.
Background
Researchers are using new technology to speed the wonders of
science to an almost dizzying pace. While physicians are
treating diabetes for example, geneticists are looking at ways to
replace the defective gene that caused the disease in the first
place.
But as researchers manipulate the very building blocks
of our biological and physical universe, is the public being left
in the wake? My guests today say science progresses better and
more responsibly when the public is informed and has a voice in
regulating research.
Historically, the public has found its voice only after research
has begun. In the 1970 1 s with nuclear power, for example,
eventually protesters shut the industry down. And again in 1993
at George Washington University in Washington, D.C., a two-cell
human embryo was separated by researchers. When the embryos were
then allowed to develop independently, again, protesters shut the
work down.
Later in the show, we'll visit the Jones Clinic for Reproductive
Science in Norfolk to look at advances in invitro fertilization
procedures and challenges facing that industry.
In the studio with me now are Doris Zallen, associate professor
of science studies and humanities at Virginia Tech. She's author
of Science and Morality: New Directions in Bio Ethics. Also
Brian Balough of UVA. His book, Chain Reaction, looks at the
history of the nuclear power industry. Both are fellows for the
Virginia Foundation for the Humanities and Public Policy.
INTERVIEW
Elliott
Thank you both for joining me.
Balogh
Glad to be here.

Zallen
Nice to be here.
Elliott
Brian, you've written a book about the history of the
nuclear power industry, and you suggests that nuclear reactors
were developed by a very closed scientific community. Do you
think that we would have had nuclear reactors at all if the
public had been more involved from the beginning?
Balogh .
Yeah, actually I think we would have and in fact I think
there might be a better chance that we would have nuclear power
in the nation's future. As you know, no nuclear power plants
have been started for some time in this country and I think that
if the public had been brought in from the beginning and made
aware of the risks along with the benefits, some of the blind
faith that they placed first of in their government and secondly
in scientists and experts might have been tempered by kind of
more reasonable expectations. The understanding that sometimes
things go wrong, sometimes things cost more, but they would have
been, representatives of the public would have been more full
players.
Zallen
Brian, do you think that some of the secrecy that was
attendant to the development of nuclear power is related to the
fact that it emerged from the war and effort to build the bomb
from which we got the "Atoms for Peace" program, do you think the
environment was different then because of the secrecy that the
war required?
Balogh
I think that definitely the substantive reason for the
secrecy in the first five to ten years of commercial nuclear
power's development. But what's really quite remarkable about
the nuclear community is how that secrecy continued long after
any substantive concerns and even today hundreds of thousands of
documents dating from the late 1940 1 s relating to the peaceful
use of commercial nuclear power are still classified in the
Department of Energy.
Elliott
Most of us don't remember that time, what year period are
you talking about and can you give us an example of some of the
things that were kept very secret?
Balogh
Sure. In 1947, the nation decided to found a civilian
agency to develop both the military and the peaceful uses of
nuclear power. Over the next five years or so, the Atomic Energy
Commission, that civilian agency, began to develop, or at least
began to do research on reactors that would produce nuclear power
that in turn would produce electricity. Examples of the kinds of

things that were kept secret from the public. The best examples
are examples of really quite strong controversy among the small
group of nuclear promoters and regulators themselves, the public
never saw that there was any kind of internal debate about the
safety of nuclear power. A man who's not usually associated with
conservative approaches to science, Edward Teller, wanted to put
all nuclear reactors underground. He felt that that would be the
only way that they would truly be safe. The industry, of course,
objected to that. To put them underground would clearly make
them commercially non competitive-. Really the only public
officials that were intimately aware of these kinds of debates
were the elected officials who served on the joint committee on
atomic energy. The one and only congressional oversight
committee.
Elliott
I'd like to look for a moment at the legacy of nuclear
power. One of the things that we're dealing with today is still,
we don't know where we're going to eventually store all of this
nuclear waste. A sight was chosen in Yucca Mountain Nevada in
1987 to store waste. The nuclear. power companies are holding on
to the waste until that site opens but the date keeps being put
off.
Balogh
Yeah, well putting off the date for dealing with some of the
messy side effects of nuclear power is nothing new to that field~
Going all the way back to the late 40's, you can find really
quite elaborate discussions of what should be done with nuclear
waste. The gist of it always was, "We don't need to worry about
it because we will develop some kind of scientific or
technological process for dealing with it by the time we need to.
Well, that time has long since passed and we still are not
completely sure as to whether the techniques suggested are really
going to work and we certainly know that they might not be up to
handling all the waste that nuclear power and weapons 0 have
already created.
Elliott
Yeah, the seventy-ton storage capacity planned for Yucca
Mountain was supposed to be ample well into the twenty-first
century but now predictions are that when the site finally does
open it will fill by the year 2015. Both of you, how can the
public, you say that the public should be participating in
science, the public should be participating in debates in
science, a lot of us look at a situation like this, we have all
of this radioactive waste, it frightens people, and the public
doesn't really know what they should be doing to be an active
participant in developing policies.
Zallen
Obviously people are going to be quite concerned. Nobody
want anything imposed without their consent, without their
ability to contribute to the decision. so I think that what has

to be established are mechanisms of bringing people together to
make decisions, and not imposing anything. That's hard to do.
Elliott
What would you recommend for this particular situation. The
buildup of radioactive waste and the correct way to dispose of
it.
Zallen
Well that's a big question. I noticed the French don't seem
to have as big a problem with it. French government has, or
French, in France I think about seventy percent of their
electrical power is produced by nuclear energy and they seem to
have built into this process decisions about dealing with the
waste. And they use vitrification and other kinds of storage
processes. I don't know how successful they are but they don't
seem to have evoked the same kind of reaction as has occurred in
this country. One of the problems was that no one thought about
the waste issue. Certainly the commercial nuclear power industry
didn't see it as their problem. As I understood it, I thought
the government owned the waste and therefore the government was
going to take care of it at some point when the technology was
Balogh
Certainly all of the waste that has been generated by
weapons production is clearly the government's responsibility.
Much of, historicly, of the waste, you're quite right, was from
radioactive fuel lent to the reactors so technicly the government
owned it. At a certain point the government actually began to
sell this. I think the question's a little difficult in the case
of waste because this is a classic example of the public finding
out about the problem decades after the program was already in
place.
Elliott
Were they lied to? Were they misled?
Balogh
Oh yeah, you know, you can find examples of being lied to
and misled, the public being misled. But I'd like to stress that
for the first of twenty-five years of nuclear power's history,
the public had much greater confidence in it than many scientists
and experts. It was a general public attitude and confidence
toward experts and government.
Elliott
Where is nuclear power today?
Balogh
Nowhere.
Elliott
Elaborate on that a little bit and I guess we should say
also that the reason that radioactive waste is a problem is

because it has a very long half-life. In other words the stuff
stays radioactive for thousands of years and therefore storage is
difficult. But it's nowhere and you
Balogh .
It's nowhere and to just briefly run over the history, it
was clear that by the mid-70 1 s a large segment of the American
public was beginning to have some doubts about the safety of
nuclear power. There had not be~n a major accident at that
point. What had happened was that some of the internal debate
within the nuclear community was beginning to become public
genuine debate. We should do it this way or that way. Simply
having a group of experts for the first time disagreeing with
each other in public unnerved the American public. I would argue
because they had been so left out of the process for the first
twenty years. You know the interesting thing is there was an
accident in 1961 that killed three people in a nuclear reactor.
It was at a testing plant out west, in Idaho as I recall. And if
you look at the press coverage there was an article about it the
day afterwards in the New York Times. and by the second day you
really had to go to page seventeen in a one paragraph article to
see anything. No one was killed at three mile island, yet
obviously that accident had a colossal impact on public opinion.
What began as quite serious doubts among the public by the mid-
70's was reenforced by the three mile island accldent at the end
of that decade and then perhaps the final nail in the coffin of
commercial nuclear power was hammered home by the Chernobyl
accident. Rightly or wrongly there's good reasons to distinguish
the reactors at Chernobyl from most commercial nuclear power
reactors but that's not how the public interpreted the news by
the time that they were already predisposed toward distrusting
certainly the nuclear industry and I think in larger terms
scientific and technological efforts.
Elliott
Well Doris, you're committed to bringing the public in to
debate on science issues. In fact you hold forums in Blacksburg
on topics ranging from diet and disease to nuclear power, to
genetic engineering. Tell us a little bit about those forums and
tell us what kind of response you get.
Zallen
The forums are called choices and challenges because the
advances in science and technology present us with a lot of
choices and they also present us with some problems and some
challenges. We have about five to six hundred people coming to
the Blacksburg site and we have distant sites around the country,
last time over 130 sites. And we feel that by holding these
forums and bringing together a large public audience of very
diverse backgrounds, we can create an environment in which the
issues can be discussed, evaluated, and even some of the problems
addressed. So we bring together scientists and technologists who
can explain what's going on in the different areas which are
under scrutiny, we bring together historians who can tell us how

we've come to think about these issues. What has been the
history of policy or what has been ~ur history of dea~i~g with
these issues. we bring together philosophers and ethicist who
can begin to show us what some of the ethical dilemmas are and
how we might go about trying to solve them. And sociologists who
look at the public impact.
Elliott
Even on complicated issues that most people don't
understand? I mean the things that we're talking about, nuclear
power, and we'll be talking with you about DNA. The public, most
people in the public really don't have a great understanding of
what a gene is, where it's found, how you clip the chromosomes to
switch genes and they don't have a ...
Balogh
Do you understand how your car runs? I mean I don't
understand how my car runs terribly well, yet I manage to
purchase a car and I'd like to believe that that decision which
cost me a lot of money is an informed one.
Zallen
Yeah, exactly. I think one doesn't have to have a P~H.D.
and years of experience in a scientific area to have the
expertise to make decisions about how it's going to be used. We
can easily explain to people how a nuclear reactor works and the
fact that there are wastes produced and the lifetime of these
wastes. We can explain what a chromosome is and how it functions
and that's the easy part. The hard part is, how do we deal with
it? What policies do we follow? What areas do we pursue?
Elliott
Well you've been part of a very successful committee, the
Recombinant DNA Advisory Committee, which in 1973, the scientific
community actually became concerned about the progress of genetic
engineering research and they actually stopped themselves. They
put a moratorium on themselves and said, "We can't go forward
with any more of this research until we've got some rules and
some guidelines".
Zallen
Well the issue at first was one of safety. If now you had
the capacity to manipulate genetic material, to move genes
around, to take genes from plants and put them in to bacteria or
genes from humans and put them into viruses, could you
inadvertently be creating an organism that would be so
devastating, that would cause a disease or a problem that was so
horrible that you couldn't really reign it back in, you couldn't
control it? So the fears initially in the scientific community
were, and in the general community were what might you be
producing that you hadn't intended to that might cause great
personal health or environmental damage? And so when the
Recombinant DNA Advisory Committee, which, who's initials are
"RAC" so we call it the "RAC", when the RAC was established in

1974, its mission was really to decide how could we go ahead with
this kind of research and yet protect the health and safety of
the scientists and researchers who were working on it and the
wider community within which this research was going on.
Elliott
And the RAC is made up of?
Zallen
The RAC is made up of scientists, clinicians, and of people
who represent the general public, though nobody is elected, there
are ethicists, there are people who are very well versed in
science policy, in political science, in sociology, people who
work with patients with rare disorders. People who can represent
various and diverse public views about gene therapy. But also,
the RAC meets in a public audience, all its meetings are
announced in advance, and several hundred people show up at each
RAC meeting to contribute their ideas and they're allowed to
speak and show their concerns and advocate certain kinds of
approaches and they are listened to.
Elliott
My understanding is any federally funded human gene therapy
program has to make a presentation before the RAC before they can
do experiments on humans.
Zallen
Well gene therapy is sort of the logical extension of
genetic engineering. Originally genetic engineering was of
viruses and bacteria then it moved up the evolutionary ladder a
little bit and we transgenic animals that have been designed to
carry out certain useful functions.
Elliott
Well you have one at Virginia Tech. Genie the pig, right?
Actually has been engineered to create a, something that clots
human blood?
Zallen
Yes, a human protein which is very hard to produce otherwise
and this a system, a way of producing this protein that could be
very helpful to people with clotting disorders. But gene therapy
has always been the dream of people in medicine because there are
many diseases and disorders that have a genetic cause. One small
gene, one of the tens of thousands of genes that we have, may
malfunction. And when that happens a person can get very sick.
And medical science has always wanted to be able to do the
ultimate treatment which is to correct the problem at the level
of the gene, to put in a normal gene. But this was really only a
dream for decades, until the era of genetic engineering and it
has become possible now to isolate the normal gene for many
disorders such as cystic fibrosis or taesachs disease or pku
disease and to begin to think about putting that normal gene back
into the body of the person who has the defective or

malfunctioning gene. We saw our first, approved our first
protocol in 1991. There have been about one hundred experiments
that have been approved.
Elliott
And occasionally I assume experiments are turned down?
Zallen
Yes. The RAC is only advisory, that is any decision it
makes is forwarded to the director of the National Institutes of
Health, and the director of the National Institutes of Health has
the final word. Also the FDA is involved and it, in a parallel
pathway, it works with the investigators in terms of the safety
of the materials that are used and put into people's bodies. the
FDA however carries out all of its deliberations in private.
Elliott
And as a matter of fact there are some companies that are
now kind of bypassing the RAC and getting approval through the
FDA which they can do if they're private companies and they're
not receiving any federal funding.
Zallen
But all these organizations voluntarily came to the RAC.
And the RAC looked at their proposals and made recommendations
and decisions on their behalf. So there was a lot of voluntary
compliance by commercial interests.
Elliott
Well let's take the last few minutes here and look at some
real scientific questions that are facing the public. A lot of
the issues are scientific but they are also moral. For example,
fetal tissue research.
Balogh
Well I think that that's a classic example of a political or
moral question and I think that you need to leave that up to the
political process so that all you need to do in that case is
ensure that it gets a fair hearing, a fair debate in the
appropriate political forum for elected officials and it
undoubtedly will end up in the court system as well which is one
of the branches of out democracy.
Zallen
I'm a little nervous about letting the courts get into this
because we've seen a whole lot of delay, the court system is very
slow and scientific issues often need a rather rapid turnaround
in terms of response.
Elliott
What if the public decides they want something stopped? Can
you really stop the progress of science?
Zallen

Yeah, you can stop, if something is considered so
objectionable or so preliminary that the public feels it needs
more information and wants things stopped, I think it will stop
research and we can cite a number of examples. The moratorium on
cloning research that's going on now even though there's no
official prohibition against it. The investigators who produced
a very early kind of cloning have had to shut down research.
because of public objections to it.
Elliott
The alar scare with apples, irradiation of produce, the most
recent scare over the growth hormone found in milk, a lot of
those things caused an initial panic and ended up being not
really that much of an issue also. So that tends to happen in
the public too.
Balogh
Yeah, one partial solution to the problem is simply time.
If, in fact, an issue is serious and the public is aware of it
the odds are that the protests will be persistent.
Zallen
Carolyn, what has impressed me through the years of working
with the public in choices and challenges is that people really
want to do the right thing. They want to understand what the
real risks and benefits of something are. They want to let
useful research go on and they endorse that very strongly and
they really want to reduce illness and discomfort and
environmental distress in the world. People really want to make
wise decisions and if they are given the opportunity and the
information, I think they can do that.
Balogh
I would just endorse that and I would say that over the long
run we have run into far more trouble denying information and
denying participation to the public than allowing that
information to be disseminated and encouraging the public to
participate.
Elliott
Doris Zallen, Brian Balogh, thank you so much for joining me
on With Good Reason.
Balogh
My pleasure.
Zallen
Great fun, thanks.
FEATURE
Brian B~lough and Doris Zallen are fellows of the Virginia
Foundation for the Humanities and Public Policy. Dr. Zallen's new
book Does it Run in the Family, about genetic testing, will be
released next year.

As my guests pointed out, new advances in science are often
accompanied by new ethical delimnas. Take the case of Renee and
David Abshire. The couple had a daughter who died in 1989 from
Tay Sachs disease. The Abshire's desire for another baby was
complicated by the fact that the couple is pro-life and in normal
pregnancy, Tay Sachs couldn't be diagnosed until amniocentisis
and then the choice would be abortion or watching another child
die. So they chose to undergo invitro fertilization at the Jones
Clinic for Reproductive medicine.at Eastern Virginia Medical
school in Norfolk, where researchers can now pull cells from a
cultured human embryo to screen DNA for genetic defects.
Dr. William Gibbons us chair of the department of obstetrics and
gynecology at the Jones Clinic.
This is the laboratory that contains the special microscope
and the specially equipped micro-manipulation equipment that
allows us to biopsy the embryo. Biopsying the embryo means
that we will take a 6-cell, 7-cell or a-cell embryo and
remove one of the cells.
Of the 13 eggs Renee Abshire produced, seven were fertilized in a
petri dish. In this lab, in a procedure that Gibbons says doesn't
harm any of the developing embryos, doctors took cells from four
of Abshire's embryos. Then the search began for Tay Sachs, cystic
fibrosis and other genetic diseases. The chromosomes from one
cell carried Tay Sachs, the other three were implanted in Renee's
uterus.
It has only been in the past two to three years, that these
techniques have been utilizable for this procedure. So at
the time, for instance, Brittany Abshire was born in 1994,
she was one of eight children in the world who had been
screened for a single gene defect such as Tay Sachs.
Baby Brittany Abshire recently celebrated her first birthday. The
Jones Institute has been on the cutting edge of in vitro
processes since the first test tube baby was cultured in a petri
dish here in 1980. Last year more than 500 couple sought in vitro
at the clinic, only a small percentage underwent the preimplantation
screening, other chose the clinic for another
reason. The Jones Institute has a high success rate for freezing
embryo -- or cryopreservation, which allows the embryos to be
kept on ice. With this process, fewer eggs are implanted int he
mother, significantly reducing the number of twins and triplets
born to in vitro couples.
This means we have the opportunity for a woman to come back,
if she conceives or if she doesn't conceive, at a later time
we can thaw the embryos that we have not put into the
uterine cavity and she will have a chance to have more
embryos placed back into the uterine cavity without having
any ovualtion induction, surgery to obtain the eggs or
whatever. So it increases the number of embryo transfers

without changing the cost very much.
Ultimately, this process, however, results in spare frozen human
embryos, which has stirred a controversy in bioethics.
There is a loophole with in vitro fertilization. Of course
one has to create many embryos and what happens with those
embryos?
Fiona Givens is communications director for the Virginia Society
for Human Life, a branch of the National Right to Life Committee,
the largest pro-life organization in the U.S.
we have this incredible power now to create life and It's a
slippery slope and we feel it is completely barbaric to then
use that human life in whatever area.
Recently, President Clinton supported giving federal grants to
perform research on embryos that are already in existance -- like
those created by in vitro processes. The ethics committee at the
Jones Clinic hasn't decided to apply for such a grant, says Dr.
Gibbons, but the clinic has received approval to experiment on
embryos with genetic defects to improve the freezing process.
I've described to you that the embryos from a couple who
have a lethal gene defect. That we would not transfer back
the lethally-affected embryos. We will utilize those
embryos, however, for that couple in trying to improve the
cryopreservation process. And so we can try to improve the
chance that all embryos will survive the cryopreservation
procedure to try to offer these couples more healthy kids.
With Clinton's new policy, the 100 or so in vitro clinics in the
country may be eligible for some federal funding for the first
time. They also face some regulations. While the Jones Clinic
boasts a high success rate of 30 percent, other clinics report
few pregnancies. Two years ago, .in response to public demand,
Congress required clinics to begin filing reports on their
success rates. But the mandate to date has not been funded.
This is With Good Reason.
On our next show, guest host David Andelman looks at religion in
two volatile political contexts. Christianity in China and Muslim
upheaval in Hindu India.
The project coordinator for Wich Good Reason, is Michael
McDowell, John Wilkinson is the assistant producer. we had
production assistance from Julie Boland. Kevin Piccini wrote the
theme music. I'm Carolyn Elliott.
This program was produced with the help of WCVE, Richmond. Thanks
also to WVTF, Roanoke.

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