The Limits of Consent: A Socio-ethical Approach to Human Subject Research in Medicine
OUP Oxford, Jan 29, 2009 - Language Arts & Disciplines - 234 pages
Since its inception as an international requirement to protect patients and healthy volunteers taking part in medical research, informed consent has become the primary consideration in research ethics. Despite the ubiquity of consent, however, scholars have begun to question its adequacy for contemporary biomedical research. The Limits of Consent explores this issue, reviewing the application of consent to genetic research, clinical trials, and research involving vulnerable populations. For example, in genetic research, information obtained from an autonomous research participant may have significant bearing on the interests of family members who have not consented to the study. This casts doubt on the adequacy of consent for such studies. The Limits of Consent also questions the assumptions that informed consent is essential and that it satisfactorily protects the principle of individual autonomy. It reviews recent empirical studies that challenge the possibility of truly informed consent and highlights the extent to which consent is governed by social norms and expectations. It also investigates how consent might be of secondary importance in some circumstances, for example when a research project appears to protect a public or community interest. Building on these observations, the authors make bold attempts to outline constructive solutions to the problems identified with perspectives from medicine, law, philosophy and sociology. This fascinating and provocative exploration of the limits of informed consent will appeal to ethicists, social scientists, health lawyers, clinical researchers, research ethics committee members, policy makers, and others with an interest in bioethics.
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1 Informed consent in medical research a procedure stretched beyond breaking point?
2 Trust and exploitation in clinical research
3 Consent and private liability in clinical research
a blind spot in the literature on decisionmaking for research participation
5 Beyond a rebarbative commitment to consent
comprehension obligations and empirical evidence
7 Is there an obligation to participate in medical research?
research as a virtuous relationship
9 Towards supported decisionmaking in biomedical research with cognitively vulnerable adults
10 Is consent sufficient? A case study of qualitative research with men with intellectual disabilities
a family affair?
indigenous participation in biobanking and salmon genomics focus groups
Other editions - View all
Appelbaum argued argument autonomy Beauchamp Belmont Report benefit Beyleveld and Brownsword biobanks Bioethics Cambridge cancer capacity Chapter claim clinical research clinical trials cognitively vulnerable concerns consent process consent to research context contract Corrigan decision decisional competence Declaration of Helsinki disability discussion duty duty of care family members fiduciary law focus groups free-riding genetic testing GOLD study Human Subjects Human Tissue Human Tissue Authority ibid important indigenous individual’s individuals informed consent interests interview liability Medical Ethics medical research Medicine moral mutation Nuremberg Code O’Neill obligation to participate one’s participate in research patient-subjects person perspectives physician-researchers potential participant practice principle protect randomized randomized controlled trial reasonable relation relevant require research ethics committees research involving research participants research subjects response risk salmon genomics seeking consent social suggest supported decision-making therapeutic misconception tion treatment trial participation trust relationships Tuskegee Syphilis Study UK Biobank understanding valid consent Weijer