Bioethics, still in its infancy, is routinely called on by the government to provide political cover for controversial public health decisions involving the life and death of Americans. Doomsday or worst-case scenarios are often at the heart of these biopolitical decisions. A central feature of science fiction, these scenarios can impart useful insights. But worst-case scenarios, like Frankenstein's monster, can also be unpredictably destructive, undermining both preparedness and the very values bioethics seeks to promote. Discovering a new flu strain, for example, leads immediately to visions
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ABSTRACT - The major medical/scientific research project of the past two decades is the human genome project and its suggested clinical applications. The project can usefully be framed as a quest to cure disease, especially cancer, and even to defy mortality. The hero of this quest is the project leader, who currently is trying, almost desperately, to "translate" the science of the genome into public health practice (screening) and the practice of medicine, often termed tailored, precision or "personalized medicine." In America's dysfunctional and patchwork healthcare system, adding another layer of extremely expensive and (to date) marginally effective screening procedures and genetics-based cancer treatments is a hard sell. Nonetheless, framing the human genome project as a quest for added life can make it seem altogether normal, even natural, and can help rally the public to its support. A second, parallel quest is the public health-political quest for a system that guarantees universal access to healthcare for Americans. The ultimate success of this quest will depend not on any scientific or medical breakthrough, even a genetic one, but on political will. Creating and sustaining political support for universal healthcare access will require, I suggest, the deployment of stories of real Americans whose lives have been made much more miserable by the lack of access to decent healthcare. These two quests are converging in ways that may make them incompatible because of the extreme expense of personalized medicine, and, at least so far, its inability to add more than marginal benefit to the lives of most Americans. Nonetheless, until Americans are more comfortable accepting death, we will continue to fight our mortality with activities we frame as quests, making our dysfunctional healthcare system less and less able to respond to the health needs of the American public. ; RESUMO - O Projecto do Genoma Humano (PGH) (Human Genome Project), bem como as suas possíveis aplicações clínicas, constituem o maior projecto de investigação biomédica das últimas duas décadas. Este Projecto pode ser descrito como uma jornada em busca da cura para a doença (em termos gerais), para o cancro (em particular) e, em última análise, uma tentativa de desafiar a nossa própria mortalidade. O herói desta jornada é o líder do Projecto, que, actualmente tenta, quase desesperadamente, "traduzir" a ciência do genoma para a prática em saúde pública e em medicina, um esforço que é denominado global e genericamente como medicina personalizada. No contexto de um sistema de saúde disfuncional e incompleto como o Americano, é difícil persuadir os cidadãos que é útil adoptarem-se tratamentos e rastreios para o cancro baseados na genética, uma vez que estes são extremamente dispendiosos e apenas (pelo menos à data), marginalmente eficazes. Todavia, enquadrar o PGH como uma jornada em busca de mais tempo de vida pode conferir ao mesmo um cariz de normalidade (quase de naturalidade) que poderá ajudar a mobilizar o público em seu redor. Uma segunda e paralela jornada, esta simultaneamente política e de saúde pública, caracteriza-se pela procura de um sistema de saúde que garanta a todos os Americanos o acesso universal a cuidados de saúde. Ora, o sucesso último desta procura dependerá não de uma descoberta científica ou biomédica, mesmo que esta provenha da área da genética, mas da existência de vontade política. Mais, criar e manter apoio político para o acesso universal à saúde requererá, sugiro, o recurso às histórias de vida dos Americanos reais, que se tornaram tão mais miseráveis pela falta de acesso a cuidados de saúde decentes. Estas duas jornadas têm convergido de tal forma que, devido aos custos enormes da medicina personalizada e, pelo menos até hoje, da sua incapacidade de conferir mais do que benefícios marginais à vida da maioria dos Americanos, elas se tornam hoje quase incompatíveis. No entanto, até que a América se torne mais confortável perante a aceitação da morte, continuaremos a combater a nossa mortalidade com actividades que melhor se caracterizam como jornadas, ajudando a que o nosso sistema de saúde, já de si disfuncional, se torne cada vez menos capaz de responder às necessidades de saúde dos Americanos. ; info:eu-repo/semantics/publishedVersion
The Fetus and the Newborn -- Legal Status of the Fetus -- The Fetus and the Law -- The Legal Aspects of Fetal Viability -- Discussion Papers of M.W. Shaw, H.P. Green and L.H. Glantz Principal Discussants: F.D. Frigoletto, N.L. Chayet, S. Bok and A.J. Dyck -- Medico-Legal Issues in Prenatal Genetic Diagnosis -- Discussion -- Karyotype, Predictability and Culpability -- Geneticophobia and the Implications of Screening for the XYY Genotype in Newborn Infants -- Discussion Papers of A.M. Dershowitz and E.B. Hook Principle Discussant: J.R. Beckwith -- Genetic Counseling — Mass Population Screening for Homozygotes and Heterozygotes -- Medicolegal Aspects of Genetic Counseling -- Problems of Informed Consent and Confidentiality in Genetic Counseling -- Discussion Papers of K. Hirschhorn and G.J. Annas Principal Discussants: S.S. Gellis and S.J. Reiser -- Problems in Genetic Screening Which Confront the Law -- The Liability of Physicians and Associated Personnel for Malpractice in Genetic Screening -- State Supported Mass Genetic Screening Programs -- Discussion Papers of H.L. Levy, J.R. Waltz and P. Reilly Principal Discussant: R.W. Erbe -- Genetics and Family Law -- Artificial Insemination by Donor — Status and Problems -- Legal Aspects of Artificial Insemination by Donor and Paternity Testing -- The Current Status of Paternity Testing -- Discussion Papers of D.P. Goldstein, J.M. Healey and A.A. Konugres General Discussion -- Genetic Counseling for Couples Who Are First Cousins -- State Channeling of Gene Flow by Regulation of Marriage and Procreation -- Voluntary Sterilization of the Mentally Retarded -- Discussion Papers of L.B. Holmes, S. Lederberg and C.H. Baron General Discussion -- Rights and Responsibilities of the Insurer -- Discussion Principle Discussant: G.W. Melcher -- Research and Experimentation — In Vitro Fertilization — Clonal Man -- The Social Control of Science -- Discussion Principal Discussant: B.D. Davis -- Experimentation and Human Genetics: Problems of "Consent" -- Discussion Principal Discussant: S.L. Chorover -- On Legislating Fetal Research -- Discussion Principal Discussant: M.J. Mahoney -- In Vitro Fertilization — A Legal Perspective -- Law and Cloning — The State as Regulator of Gene Function -- The Psychopathology of Clonal Man -- Discussion Papers of P. Reilly, S. Lederberg and L. Eisenberg Principal Discussant: M.W. Wartofsky -- Eugenics, Ethics, Law and Society -- Biological Roots of Ethical Principles -- On the Necessity of Legislating Morality for Genetic Decisions -- Why Shouldn't We Have a Eugenic Policy? -- Discussion Papers of S.E. Luria, S. Callahan and M. Lappe General Discussion -- Authorizing Death for Anomalous Newborns -- Discretionary Non-Treatment of Defective Newborns -- From Social Movement to Clinical Medicine — The Role of Law and the Medical Profession in Regulating Applied Human Genetics -- Discussion Papers of R.A. Burt, J.A. Robertson and J.R. Sorenson General Discussion -- Contributors.
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In: Journal of the Society for Gynecologic Investigation: official publication of the Society for Gynecologic Investigation, Band 8, Heft 5, S. 259-259
A retrospective is presented on the 50th anniversary of the trial of Nazi physicians at Nuremberg, Germany, called the Doctors' Trial. The ensuing Nuremberg Code's restrictions on human experimentation are reviewed. The platform of the World Medical Assoc, formed in 1946 with the goal of promoting the health of humanity, is presented. The British Medical Assoc's 1992 documentation of physician involvement in human rights abuses is discussed in the context of hunger strikes. A proposal is made for the creation of a permanent Nuremberg tribunal & international medical tribunal to judge ongoing human rights abuses, as well as the incorporation of humanitarian law provisions into the rules of national medical licensing boards. Adapted from the source document.
Will the Human Genome Project'S (HGP) social policy research program function as an "enhancer" and "promoter" for the entire "sequence," or will it result in missense and nonsense mutations? The jury, of course, is still out, but we believe it is more properly viewed as a key promoter that is integral to the proper functioning of the HGP itself.