HGP10 Symposium: Genomics and Society: A Historical View

[music playing] Aaron Goldenberg:
It was a news story, and they interviewed a mom who had two sons. Her husband had died
of Huntington’s disease, and she had two sons. And they asked her whether or not she wanted
to get them tested, and she said that she had wanted — that she didn’t want to get
them tested, and that one of her reasons was because — and she said this in a joking way
— she only had enough money to send one of them to college. James Watson:
The last thing I’d like to say is that as we get this — these genetic messages, there
will be ethical considerations that will come up. And in sort of helping to lead this program,
I want to place considerable emphasis that as we accumulate this knowledge, that the
public is protected from misuse. Aaron Goldenberg:
The screen kind of went black at that point, and I — it immediately hit me. And I said,
“This is — there’s a lot here.” Jean McEwen:
The fact that genetic information is inherently predictive, so that, you know, our DNA tells
us some things about what may happen to us in the future. James Watson:
I think from the very start, NIH initiate discussions so that as this knowledge is accumulated,
the public is prepared to deal with it. Aaron Goldenberg:
There’s something here that needs to be talked about, that needs to be brought out, that
there are implications of genetic research that maybe go beyond the ways that we typically
think of science and technology, and the integration of those sciences into clinical applications. [music playing] Robert Cook-Deegan:
When Jim Watson, at his press conference, who announced his becoming the director of
the then Office of Human Genome Research, kind of sprung on the NIH administration that
he was going to devote a certain fraction of his budget to thinking about the ethical
and social implications of doing the science and applying the science, that seemed like
it was kind of a natural decision to make. Nancy Wexler:
I thought that Jim Watson, really, was the only human being on the planet that could
have done it because Jim had the most impeccable molecular credentials. You know, nobody would
accuse him of being a soft scientist. Patricia King:
I thought it was — I thought it was a great idea that Jim Watson saw, at the very outset,
the need to spend money, thinking hard and seriously about legal, ethical, and social
issues. Jean McEwen:
The ELSI program was established at the beginning of the Human Genome Project to basically anticipate
and address the ethical, legal, and social issues that would be coming up as a result
of the genetic research, to try to anticipate them before they actually arose so that we
can come up with policy options to address them. Patricia King:
And I thought it was about time. [music playing] Jean McEwen:
Basically, almost from the beginning, 5 percent of the extramural research budget at the Genome
Institution has been set aside for the ELSI program to conduct this kind of research. Joy Boyer:
The ELSI Research Program, since 1990, has a cumulative budget of about $300 million,
and that goes through 2012. So that’s 22 years. Over that time, we’ve funded 470-ish individual
projects. Jean McEwen:
A lot of the research that the ELSI program supports is really geared toward providing
sort of an evidence base on which we can develop really good policy options to address these
kinds of issues, both policy options for the research community, in terms of how the research
is conducted; policy options for the clinical community, in terms of how the information
is used in the clinic; and also broader social policy, the ways that genetic information
can and will be used in various other parts of society. Karen Rothenberg:
It’s supported the ability to study those questions empirically, quantitatively, qualitatively,
and with that, I think that’s enabled the science to move forward without being subject
to moratoriums. Joy Boyer:
The ELSI program is really a research program. And so we fund research that informs those
discussions. I think the discussions take place naturally. You know, people are concerned
about these issues. And what the ELSI research program does is it actually funds researchers
to produce data. Wylie Burke:
The availability of research funding made it much more possible to pursue many ELSI
questions empirically, and that has added, in a very important way, to the kind of data,
to the richness of the data we have available, to think about what we call “ELSI questions.”
I think the ELSI research program is a model for NIH. [music playing] Jean McEwen:
Supporting research is really just a part of what we do in the ELSI program. The other
big part of what we do is that we really serve as sort of ELSI consultants to the other people
in the extramural division at the Genome Institute, advising them on a lot of the big community
resource genomics projects that are underway. Some examples would be the International HapMap
Project, the 1,000 Genomes Project. Now the — you know, some of the Common Fund projects
that NHGRI is heavily involved in. Joy Boyer:
I think the ELSI program is often called on to provide expertise in the development of
new projects. And I think that’s become much more prevalent over the last several years.
And the way — the way it usually works is one of the program directors who’s handling
one of the projects, be it HapMap, or Human Microbiome Project, or 1,000 Genomes, actually
approaches one of us and says, “You know, I think there may be an issue here that might
be problematic, and we’d like your input on how to handle it.” [music playing] Mildred Cho:
I think that ELSI issues are actually really accessible to members of the general public,
perhaps even more so than the more technical issues around genomics research or biomedical
research, because people, I think, have an intuitive sense of the existence of ethical
questions, and perhaps have had their own experiences that lead them to raise those
ethical questions on their own. Robert Cook-Deegan:
Everybody has, I think, a tighter grasp or a more intuitive grasp, I think, many times
of what we call the ELSI issues than they do of the science itself, although they immediately
see the linkages between this fast movement of the new technologies and the ethical issues
that they’re going to pose as you use those tools in the real word. Mildred Cho:
And a lot of the questions come up, because for both the medical conditions and the things
that we think of less traditionally as medical conditions, they’re very hard to define. So
it’s hard to define things like “intelligence.” What does that mean? Robert Cook-Deegan:
They’re going to find that the questions are going to get asked are not, “How do you sequence
DNA?” but “How are we going to make sense of all that stuff? And if this DNA stuff really
matters, does it mean I’m going to get sick,” or — “And if I’m going to get sick, how am
I going to know that?” and “Who’s going to tell me that?” Mildred Cho:
I think a lot of the questions that are raised about genomics and its application and research
generally are more — perhaps more pointed when you talk about traits such as behavior,
which are sometimes thought of as being part of health care and sometimes not. And so one
of the reasons why we’re interested in behavior, defined broadly, is because the ethical issues
and the social issues. Wylie Burke:
How much do people understand about ELSI issues? My sense of it is that there is a lot of common
sense understanding of the difficulties that we deal with in ELSI. There’s a lot of intuitive
thinking about it, not necessarily informed by a lot of sophisticated science understanding,
but a common sense understanding. [music playing] Robert Cook-Deegan:
That’s another legacy of NHGRI, is that when you do all this super cool science, you have
a research program to think about it, and also a social network that connects that research
to the people doing the science, and doing the applications, and doing the translational
work. I don’t think other parts of NIH or other parts of the federal government have
done as good a job of that as in NHGRI. Wylie Burke:
NHGRI has played a tremendously important role, I think, in research around bioethics,
around policy-relevant questions, around social implications of science. By having a designated
ELSI program, they created an opportunity for researchers to pursue questions, but I
think equally important, to expand the scope. Joy Boyer:
I think the greatest success is really establishing this community of researchers, establishing
the expertise in this area, because I think that expertise, regardless of the research
that’s done, is having a big impact on genomic research, and I think on all research. Eric Juengst:
I think the Human Genome Institute has had a critical role in creating this community
of scholars, now going into its second generation, as our trainees come online, of people who
take as their academic vocation, paying serious attention to the questions that genomic research
raises. Karen Rothenberg:
The NHGRI and the NIH are seen as the international leaders with respect to looking at the ethical,
legal, and social implications of genetics and genomics. We set the bar for the world. Robert Cook-Deegan:
So, in a way, the U.S., probably without being fully conscious about it, what became the
NHGRI also became the model for how to do ELSI research at these other places all over
the world. [music playing]

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