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The two papers appear to address the same concern, adequate protection of the experimental subject, but from different perspectives. Jaeger expresses anxiety over what seems to be an unavoidable dilemma: on the one hand, he is concerned for the individual subject whose hopes ultimately may be devastated when the experiment does not succeed, and, on the other, he desires to contribute to the basis for hope itself. In the second paper, Arzbaecher examines the complex issue of how one ought to deal with the media that over dramatizes and one's colleagues who irresponsibly exaggerate their experimental results. Regarding Jaeger's remarks, I would first like to make the observation that Jaeger's concerns might be compared to those of an oncologist. For instance, Jaeger's feelings of discomfort in approaching a patient with an idea for a new engineering technique might be viewed as similar to the feelings an oncologist experiences when he or she must decide whether to inform a terminal patient, in desperate circumstances, of some experimental procedure. This experimental procedure maybe occurring at a location that would involved a great emotional and financial burden for the patient and the patient's family. Also, the oncologist may have difficulty in translating, in coherent fashion for the patient, the figures that are often reported in such studies indicating the success rates. Also, how do success rates for treatments translate into actual quality of life for any particular patient? Another way in which Jaeger's situation could be compared to that of the oncologist is that it is not clear whether the patient has the critical faculties that would enable him or her to assess the situation in a way objective enough to determine that the patient is legitimately giving consent to participate in the experiment. That is, the patient might be in such desperate circumstances that there is a sense, perhaps, in which he or she clearly cannot say no, where the patient really has no choice. In such circumstances, it would seem to he possible to claim that there is an element of coercion involved, that requires further analysis. While this issue may not be that important where the patient in question is terminal (with very limited time left, in any case), it may be a very important issue for the bioengineer. The patient of the bioengineer may have years to look forward to (one source of the urgency to do something), and the circumstances of the patient, from a physical point of view, would only seem to indicate possible improvement in the patient's quality of life. The problem, of course, is that the patient might be subject to possible psychological trauma if the procedure does not succeed. Also, the quality of life issue is complicated for the bioengineer in that there is a sense in which the quality of life of the patient will be improved to the extent that he or she comes to terms with the situation and deals with it in a way that allows him or her to be less constrained emotionally and psychologically (as opposed to physically) by the circumstances. Ultimately, for Jaeger, the issue appears to be determining what is an ethical approach to the patient given all of the above concerns. In response, I think that it can be argued that he has taken the important first steps. First, he is aware of the danger of projecting one's professional hopes on the patient. Second, he has arranged to have a consulting clinical psychologist on hand, with an expertise in rehabilitation, and in this context the central issue seems to be that of informed consent with the psychologist playing a very significant role. Whether the patient is informed in the sense that he or she has understood the procedure is a question that the researcher can answer without assistance from others. However, whether the patient really understands the likelihood of success and whether the patient truly gives consent (and could have chosen otherwise without any element of coercion) are questions which appear appropriate for the psychologist to address. One particular danger, not mentioned by Jaeger, which could also be dealt with by the clinical psychologist, is the possibility of a patient construing a bad outcome in an experiment as his or her failure. Such a conclusion must be avoided. Arzbaecher's paper raises fundamental issues impossible to resolve in this space. In the profession there appears to be widespread recognition that at Wright State University Jerrold Petrofsky is irresponsibly misleading potential experimental subjects concerning the success of his work. Petrofsky also appears to be allowing the media to exaggerate what he has achieved. In response, is it enough to publish letters in professional journals? Clearly, such a response does not seem to protect subjects as desperate as both Arzbaecher and Jaeger describe. Does one take some sort of action in trying to establish procedures for regulating experiments on a national level? Does one call for a congressional committee to investigate informed consent procedures that occur at different research institutions? Does one write to the networks, to the media that report in exaggerated ways the results of experiments and ask for equal time for one's dissenting point of view? To what extent and in what way does one focus on distinguishing media exaggeration from professional irresponsibility in reporting inaccurately the success rates of experiments? If the issue has to do with media exaggeration, it would seem possible to suggest that this is the sort of issue which a professional society ought to consider. One could conclude that efforts have to be made to educate the media about the true state of bioengineering. Clinical psychologists involved in rehabilitation ought to make clear the dangers involved in irresponsibly reporting the success rates of experiments, the seriousness of raising false hopes in individuals who are in desperate circumstances. Of course, it must be recognized that this is precisely what some members of the media trade in. It is clearly very profitable for them to raise the false hopes of the desperate. The question is, given that this is clearly going to occur, in what way is the ethical obligation of the professional society properly discharged? The response must be to make persistent efforts to educate the public, and to take action to isolate irresponsible colleagues. Attempts must be made to work with responsible media representatives. The professional society ought to establish guidelines that determine at what point, in what way, results of experiments will be disclosed to the public. It may be suggested that all of this will adversely affect the availability of research funds. I would think that this is unlikely. Researchers in physical medicine are appropriately aggressive in the judgment of their colleagues and research funds appear to continue to be readily available. However, the availability of research funds, as the public becomes less excited due to the candid disclosure of research results, might decrease. This would be very unfortunate and would obviously not serve the interests of those in the future who might benefit, but the emotional and psychological devastation of individuals in the present, improperly informed, would simply not be worth it. |
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