Biomedical subjects
Publications and source records attributed to Paul Root Wolpe.
Science is a powerful force for change in modern society. As the professionals at its helm, scientists have a unique responsibility to shepherd that change with thoughtful advocacy of their research and careful ethical scrutiny of their own behavior.
PURPOSE: Concern over stigma as a consequence of genetic testing has grown in response to the recent increase in genetic research and testing resulting from the Human Genome Project. However, whether a genetic or hereditary basis necessarily confers a stigma to a condition remains unexamined. METHODS: We performed a qualitative interview study with 86 individuals with one of four conditions: deafness or hearing loss, breast cancer, sickle cell disease, and cystic fibrosis. The first two groups were divided approximately between people who ascribed their conditions to a genetic or hereditary cause and those who did not. RESULTS: Respondents interpreted genetic or hereditary causes and nongenetic causes in a variety of ways. Subjects with breast cancer reported the most consistently negative interpretation of genetic cause. This response concerned future ill health, not an enduring sense of stigma. Deaf and hard of hearing subjects provided the most consistently positive comments about a genetic or hereditary basis to their condition, casting familial hearing loss as a vital component of group and individual identity. Respondents with sickle cell disease and cystic fibrosis offered similar and positive interpretations of the genetic cause of their condition insofar as it meant their conditions were not contagious. CONCLUSIONS: Although some subjects report feeling stigmatized as a result of their condition, this stigmatization is not uniformly associated with the condition's cause, genetic or otherwise. Instead, stigma emerges from a variety of sources in the context of the lived experience of a particular condition.
OBJECTIVE: To examine the role of the practitioner, informed consent, and genetic counseling in genetic testing decisions and to assess their relative influence on women's decision to have clinical BRCA1/2 testing. METHODS: Qualitative study using in-depth open-ended interviews with 68 women who had considered clinical BRCA1/2 testing. RESULTS: Slightly less than half of the women who had considered BRCA1/2 testing were found to have had a clear and preexisting desire to test or not to test, irrespective of practitioner attitude or advice. CONCLUSION: The decision to accept or decline genetic testing is the result of a complex process that goes beyond interactions between health care providers and patients, indicating a caution against exclusive reliance on informed consent or counseling encounters.
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Detection of deception and confirmation of truth telling with conventional polygraphy raised a host of technical and ethical issues. Recently, newer methods of recording electromagnetic signals from the brain show promise in permitting the detection of deception or truth telling. Some are even being promoted as more accurate than conventional polygraphy. While the new technologies raise issues of personal privacy, acceptable forensic application, and other social issues, the focus of this paper is the technical limitations of the developing technology. Those limitations include the measurement validity of the new technologies, which remains largely unknown. Another set of questions pertains to the psychological paradigms used to model or constrain the target behavior. Finally, there is little standardization in the field, and the vulnerability of the techniques to countermeasures is unknown. Premature application of these technologies outside of research settings should be resisted, and the social conversation about the appropriate parameters of its civil, forensic, and security use should begin.
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Medical training must at some point use live patients to hone the skills of health professionals. But there is also an obligation to provide optimal treatment and to ensure patients' safety and well-being. Balancing these two needs represents a fundamental ethical tension in medical education. Simulation-based learning can help mitigate this tension by developing health professionals' knowledge, skills, and attitudes while protecting patients from unnecessary risk. Simulation-based training has been institutionalized in other high-hazard professions, such as aviation, nuclear power, and the military, to maximize training safety and minimize risk. Health care has lagged behind in simulation applications for a number of reasons, including cost, lack of rigorous proof of effect, and resistance to change. Recently, the international patient safety movement and the U.S. federal policy agenda have created a receptive atmosphere for expanding the use of simulators in medical training, stressing the ethical imperative to "first do no harm" in the face of validated, large epidemiological studies describing unacceptable preventable injuries to patients as a result of medical management. Four themes provide a framework for an ethical analysis of simulation-based medical education: best standards of care and training, error management and patient safety, patient autonomy, and social justice and resource allocation. These themes are examined from the perspectives of patients, learners, educators, and society. The use of simulation wherever feasible conveys a critical educational and ethical message to all: patients are to be protected whenever possible and they are not commodities to be used as conveniences of training.
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Emerging neurotechnologies, including psychopharmaceuticals, brain stimulation, implantable brain chips, transcranial magnetic stimulation, and brain imaging raise a number of ethical questions. One of the most contentious is the proper role of these technologies in improving or increasing mental and neurological traits and skills in those with no identifiable pathology. The "enhancement" debate centers around a number of concerns and philosophical approaches to the proper role of medicine, therapeutics, and desirable human qualities. Arguements for and against neurological enhancement are reviewed, and historical and social perspectives are offered.
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The response of Barbara Pfeffer Billauer to my article "If I Am Only My Genes, What Am I? Genetic Essentialism and a Jewish Response" highlights the conflict between a sociological understanding of religion and the resistance to such analysis from within a faith tradition. Ms. Billauer makes three main points; the first strangely credits to me, and then attacks, an argument the article takes great pains to refute, but does so to emphasize the faith's prescient guidance in matters scientific. The second attempts to rebut my critical analysis of the tensions inhernet in Jewish views of the body with an insistence that Judaism so perfectly balances the relation between the sacred and profane that there is not now, and never was, the slightest tension between corporeality and divinity in the Jewish corpus. The third uses my article as vehicle for her to expound on an interesting but tangential formulation of three Jewish terms. In all, the need to defend her interpretation of Judaism's solutions to the problems the article raises results in un-self-critical and ahistorical theorizing, making the utility of her arguments in a discussion of the sociology of religion unsatisfactory.
With the advent of the Genetic Age comes a unique new set of problems and ethical decisions. There is a tendency to take the scientific developments presented by modern genetics at face value, as if the science itself were value-neutral and not influenced by cultural and religious images. One example of the fallout of the Genetic Age is the development of a "genetic self," the idea that our essential selfhood lies in our genes. It is important to understand the assumptions of the Genetic Age, the development of genetic selfhood, and the broader cultural trends and assumptions that underlie modern genetic thinking. It is equally important, however, to shape a reaction to the concept of a genetic self. Judaism has long carried on a unique discussion about the nature of selfhood in different times and places and about the relation of the corporeal self to the essential self. Insights from Judaism therefore may help to craft a reaction to the modern genetic self that incorporates the best of modern genetics as well as the integrity of a more transcendent selfhood.
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