Genetics and the common good.
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Biomedical subjects
Publications and source records attributed to C A Tauer.
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The development of public policy on bioethical issues can be approached through substantive moral and philosophic reasoning, or through balancing perceived societal views as to what is ethically acceptable. The Human Embryo Research Panel had to apply the first approach to the question of the moral status of the preimplantation embryo. Only after concluding that the preimplantation embryo was not a full human subject could the panel consider the conditions under which embryo research was ethically acceptable, given a range of societal views, concerns, and interests.
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Good communication between clinician and pregnant patients should avert most decision-making conflicts. Pregnant women may legitimately refuse prenatal screening procedures in view of the limited follow-up options. They also may choose alternatives to most standard obstetric interventions; clinical studies raise questions about the necessity of these interventions. A well-informed woman may refuse cesarean delivery in most situations: predictions of harm are highly uncertain, and she would be asked to accept risk and harm for the sake of another. However, in exceptional situations in which harm to the fetus is nearly certain and vaginal delivery also endangers the woman, the harm-to-others principle limits autonomy, and coercion may be ethically justifiable.
What can healthcare providers do if a pregnant woman refuses cesarean delivery when the life of the fetus and perhaps her own life are in jeopardy? Only in exceptional circumstances would it be morally permissible, or morally required, to compel her to submit to invasive medical procedures against her will. Ethical analysis of all maternal-fetal issues depends on how the maternal-fetal dyad is conceptualized. The pregnant woman and her fetus may be viewed as an organic whole (the one-patient model) or as two distinct individuals (the two-patient model). The one-patient model balances prospective benefits to the fetus with possible harm to the mother. In exceptional situations, such as near certainty of serious harm to the fetus and the mother if a cesarean is not performed, a physician or institution wishing to override the woman's refusal within the one-patient model invokes paternalism. Recourse to the courts to force the woman to undergo the cesarean would probably not be feasible when applying the one-patient model. The two-patient model focuses more on fetal well-being because it views the fetus as a distinct individual and patient. Catholic institutions usually subscribe to the two-patient model. When near-certain harm to the fetus is coupled with probable benefit to the woman, the institution may ethically override her right of refusal of a cesarean. However, the institution must be prepared to face legal scrutiny should they override the woman's wishes. Other means of achieving the goals of medicine (such as persuasion based on a good doctor-patient relationship) are preferable from both an ethical and a human standpoint.
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Consideration of the ethics of human gene therapy does not seem to raise questions that have never been asked before. However, particularly when gene therapy is extended to modification of the germ cells, several ethical issues take on an added importance or significance. These issues are: (i) possible moral limitations on tampering with "human nature"; (ii) the extent of our responsibility to future generations; (iii) the appropriate use of early human embryos in genetic research. Furthermore, standard norms in clinical and research ethics require careful application to trials of human gene therapy, even if only somatic rather than germ-line improvements are sought.
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Public policy decisions concerning embryos and fetuses tend to lack reasoned argument on their moral status. While agreement on personhood is elusive, this concept has unquestioned moral relevance. A stipulated usage of the term, the psychic sense of 'person', applies to early human prenatal life and encompasses morally relevant aspects of personhood. A 'person' in the psychic sense has a minimal psychology, defined as the capacity to retain experiences, which may be nonconscious, through physiological analogs of memory; and the potential to become a person in the full sense. Psychic personhood merits attribution of moral personhood because the experience of a 'person' in the psychic sense has continuity with the experience of a full person; and this experience begins to determine the development of the personal psychological characteristics of that individual. Psychic personhood is a rationally defensible boundary for invasive research involving human embryos and fetuses. Lacking precise empirical knowledge, policy makers could attribute psychic personhood at the time of earliest brainstem activity, that is, during the seventh week of fetal development.
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