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Biomedical ethics developed in the late twentieth century as a challenge to the self- regulatory ethic that previously governed medical practice. Yet in recent years bioethics has come under scrutiny from the social sciences, which claim that the field relies upon an idealised notion of moral agency and fails to consider the extent to which ethical discourse is embedded in a wider societal context. In addition, bioethical concepts such as patient autonomy and informed consent have also recently been challenged by the rise of genetic medicine. After evaluating debates in the historical and philosophical development of biomedical ethics, this thesis uses a case study in genetic epidemiology (commonly referred to as biobanking) to examine competing normative and empirical claims made by bioethicists and social scientists. The study investigates the views and experiences of potential donors to a biobank in north-west England. Data analysis gives particular emphasis to socio-ethical issues such as consent, genetic donation, altruism, and benefit-sharing. Evidence from the case study illustrates that bioethics is susceptible to many of the charges levelled against it - namely that it lacks proper understanding of the processes by which moral concepts and categories are embedded in ongoing forms of social practice and experience. The thesis concludes with suggestions as to how bioethics may better combine philosophical and sociological methods.

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by Ravindra K. Ahuja, James B. Orlin and Robert E. Tarjan. / Also issued as: Working paper (Sloan School of Management) ; WP no. 1966-87 / Includes bibliographical references (p. 18-19). / Research supported by the National Science Foundation. DCR-8605962 Research supported by the Office of Naval Research. NOOO14-87-K-0467

Richard H. Lyon. / Includes bibliographical references and indexes.

Assisted Reproductive Technology has, in the last 40 years, raised numerous ethical questions. One of these ethical questions has been whether or not children born as a result of Assisted Reproductive Technology treatments may be harmed as a consequence of being brought into existence in this way. Harm caused to children is quite rightly a serious concern for society and society expects the State to intervene to protect children from parents who pose a significant risk to their children. Towards this end section 13(5) of the Human Fertilisation and Embryology Act 1990 requires licensed infertility treatment clinics to ‘take into account the welfare of the child who may be born as a result of treatment’ when considering whether or not to provide a woman with treatment services. This thesis will argue that section 13(5) of the Human Fertilisation and Embryology Act 1990 should be amended as it is acts as nothing more than an arbitrary and unjustified infringement on an individual’s right to reproductive liberty; is an ineffectual means of promoting the welfare of the child who may be born as a result of treatment; is philosophically incoherent; and is inconsistent with the law as applied in so-called ‘wrongful life’ cases. The argument that section 13(5) of the Human Fertilisation and Embryology Act 1990 should be amended will be grounded upon the contention that an individual’s right to reproductive liberty should be accorded particular respect. This thesis will argue for a right to reproductive liberty which encompasses a negative right of the individual to be free from unjustified interference by the State when making reproductive choices. The pervasive influence of the child welfare principle as applied in the context of decisions directly impacting upon them has, it will be argued, played a significant part in the inclusion and retention of section 13(5) within the Human Fertilisation and Embryology Act 1990. This thesis will examine the way in which the child welfare principle as applied to children has grown in influence and how an unquestioning adherence to this worthy principle has led to an incongruous version of it being applied at the pre-conception stage. While the State have a solid mandate to protect the welfare of children this thesis will argue that that mandate cannot realistically be extended to apply to future children, when to refuse an individual access to Assisted Reproductive Technology has the effect of preventing the child whose welfare is to be taken into account from being brought into existence in the first place.