The Belmont Report: 25th anniversary interviews
Oral History of the Belmont Report
and the
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research
Office of Human Research Protections, US Department of Health and Human Services
introduction
Dorothy Height, PhD, Dorothy I. Height, PhD, Chair, Executive Committee, National Council of Negro Women, Washington, D.C. (Commissioner)
June 30, 2004
“Within the past year a young woman, who had been the victim of sterilization, really was not only depressed, but she was so despondent that in her little town the whole church had a service to pray to try to get her back on her feet. It was all about the fact that she wanted to have more children and she couldn't have children, and this was affecting her.
I was in a meeting where this issue came up, and someone stood and said, this is just--it happened to have been an interracial meeting, and this, this white man said, ‘Nothing like that could happen here. These are good hospitals. Nothing like that could happen.’ And of course, you can imagine what the reaction was in the congregation, especially from a person they thought was a friend, but though he was a friend, he did not believe what this young woman was saying, and what the church, what they were concerned about.
And I said I thought these days were gone, but you see, we still have a distance between what has been acted upon at the top and how that message has gotten down. I think there has to be much more direct public information and education, and a recognition that we have some problems we cannot correct--it's too late--but give people assurance that we're ready to move forward. There is not a sense of well being and security around such matters in the community, and we have to recognize that, and we cannot write it off and say there's something wrong with the people.
I think the wrongness is how we get the message out and how we assure that those who administer understand it and treat people as if they were all equal.”
Patricia King, JD, Professor of Law, Georgetown University Law Center, Washington, DC (Commissioner)
September 9, 2004
“One of the things to think about with respect to the National Commission is, although I didn't have a biomedical ethics background in any way, I learned that people were very skeptical that establishing a National Commission to think through issues of research on human subjects was a valuable activity. I'm told that at least in the medical community that the medical community thought it was a really fairly foolish idea, and so there was trouble establishing the Commission. But that was a downside.
The upside was we were able to operate, even with very controversial issues, and in public, without anybody thinking we had power, and that is wonderful because you're allowed to deliberate and think through issues without advocacy groups, lobbying efforts, political machinations, in terms of who was appointed and who's not appointed, and how you stack a group versus not stacking a group. And I attribute a great deal of the success of the Commission to the fact that we operated under the radar, at least the Washington ‘inside beltway’ radar, and that worked to our advantage.”
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“We all know that HHS has still not issued guidelines for conducting research on vulnerable populations that don't fall into the category of children or women or prisoners, vulnerable populations in terms of educationally disadvantaged or economically disadvantaged. I don't think that's for lack of thinking that it's an important thing to do. I think that we just haven't been able to figure out yet how to include people without putting them at more risk than we want to put them, without creating greater risks than necessary.”
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“What I think I would like to see is something that's already beginning--some careful assessment of how the system actually operates. We do a fair amount with informed consent, for example, but I'm not sure that we have a sense of what studies are approved, and why, and how harm is assessed, for example. I'm not sure that we have an empirical base for assessing how IRB's operate.”
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“… what you basically want to have accomplished, I think, is to have some oversight mechanism that would apply to private research, as well as publicly funded research because that's actually what is the most valuable thing about the publicly funded research, that there is monitoring, and oversight, and an opportunity to impose substantive guidelines.”
Duane Alexander, MD, Director, National Institute for Child Health and Development, National Institutes of Health, Bethesda, MD
July 9, 2004
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