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173 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 that I am supposed to be writing something about the change over those 20 years and this will allow me to put it off yet for another -- anyway I think that is a subject that we might give consideration to. A number of us feel very strongly about the issue of education. This has come up repeatedly in relationship to the knowledge that IRB members bring to their work and to the failures of investigators, the young ones and more experienced ones, because they simply do not know enough about research ethics or ethics in general. The media is very poorly informed about issues of ethics and policy makers, legislators and the public at large. There is not only the issue of ethics. It is the issue of science education in general that came up through the cloning report. We think that this again is an area where staff background -- and we begin to find out who is doing what. What foundations are out there who have money to do studies on education? What government bodies are doing it or think they are doing it and so forth? Just as in other areas we think we have to lay out a fair amount of information and background studies before we tackle it but we feel very, very strongly about it. Bette Kramer and I spoke about it earlier today
174 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 and she may want to comment. And then there are some other problems that have been mentioned. Gene patenting, bioethical issues in behavioral research. I have these lower down on the list because there is limit but behavioral research does not fit well into the biomedical model. It has always had discomforts in IRB's and yet an alternative is not clear. And then there is compensation for research related injuries which also keeps coming up and subsiding back down again. I think because nobody can figure out what to do. There are larger areas. The right to health care. The previous national commission articulated the successful -- previously successful one -- articulated years ago that there was a -- that the nation had an ethical obligation to ensure equitable access to medical care. It is now 20 years later. Lots of things have changed. Inequity persists and grows, in fact, and while it is a problem there is a question of whether we should take it up and if we took it up towards what end and what resolution, and what will become out of it. Alta Charo raised the question about the interesting issue about who owns the body as a larger question. There are major cultural differences in what your relationship to your body is in terms of ethics and
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174<br />
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11<br />
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and she may want to comment.<br />
And then there are some other problems that<br />
have been mentioned. Gene patent<strong>in</strong>g, bioethical issues <strong>in</strong><br />
behavioral research. I have these lower down on the list<br />
because there is limit but behavioral research does not fit<br />
well <strong>in</strong>to the biomedical model. It has always had<br />
discomforts <strong>in</strong> IRB's and yet an alternative is not clear.<br />
And then there is compensation for research related<br />
<strong>in</strong>juries which also keeps com<strong>in</strong>g up and subsid<strong>in</strong>g back down<br />
aga<strong>in</strong>. I th<strong>in</strong>k because nobody can figure out what to do.<br />
There are larger areas. The right to health<br />
care. The previous national commission articulated the<br />
successful -- previously successful one -- articulated<br />
years ago that there was a -- that the nation had an<br />
ethical obligation to ensure equitable access to medical<br />
care. It is now 20 years later. Lots of th<strong>in</strong>gs have<br />
changed. Inequity persists and grows, <strong>in</strong> fact, and while<br />
it is a problem there is a question of whether we should<br />
take it up and if we took it up towards what end and what<br />
resolution, and what will become out of it.<br />
Alta Charo raised the question about the<br />
<strong>in</strong>terest<strong>in</strong>g issue about who owns the body as a larger<br />
question. There are major cultural differences <strong>in</strong> what<br />
your relationship to your body is <strong>in</strong> terms of ethics and