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Beyond Autonomy: Limits and Alternatives to Informed Consent in Research Ethics and Law

Beyond Autonomy: Limits and Alternatives to Informed Consent in Research Ethics and Law

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Respect for autonomy has become a fundamental principle in human research ethics. Nonetheless, this principle and the associated process of obtaining informed consent do have limitations. This can lead to some groups, many of them vulnerable, being left understudied. This book considers these limitations and contributes through legal and philosophical analyses to the search for viable approaches to human research ethics. It explores the limitations of respect for autonomy and informed consent both in law and through the examination of cases where autonomy is lacking (infants), diminished (addicts), and compromised (low socio-economic status). It examines alternative and complementary concepts to overcome the limits of respect for autonomy, including beneficence, dignity, virtue, solidarity, non-exploitation, vulnerability and self-ownership. It takes seriously the importance of human relationality and community in qualifying, tempering and complementing autonomy to achieve the ultimate end of human research - the good of humankind.
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  • Introduction. The limits of respect for autonomy David G. Kirchhoffer; Part I. Exploring Problems of Respect for Autonomy in Bioethics, Law and Society:: 1. Autonomy and the law:: widely used, poorly defined Bernadette J. Richards; 2. Lack of autonomy:: debates concerning research involving children Thomas H. Murray; 3. Diminished autonomy:: consent and chronic addiction Steve Matthews and Jeanette Kennett; 4. Compromised autonomy:: social inequality and issues of status and control S. Stewart Braun; Part II. The Search for Alternative or Complementary Concepts Surrounding Autonomy:: 5. Self-ownership in research ethics Garrett Cullity; 6. Beneficence in research ethics David G. Kirchhoffer, Christi D. Favor and Christopher D. Cordner; 7. Dignity, being and becoming in research ethics David G. Kirchhoffer; 8. Virtues in research ethics:: developing an empirically-informed account of virtues in biomedical research practice Justin Oakley; Part III. Beyond Autonomy:: Turning to the Community to Protect the Individual:: 9. Duties of shared membership in research ethics Jose Miola; 10. Engaging communities in human research in the Global South Anita Ho; 11. Reducing shared vulnerabilities to data misuse Wendy Rogers.
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