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The research ethics system was created without the help of people who know what it is like to be a research subject. This is a serious omission. Experts have overlooked ethical issues that matter to subjects. Silent Partners moves subjects to the forefront, giving them a voice in research ethics.
Table des matières
- Contents
- Preface
- 1 Subject Perspectives: The Missing Element in Research Ethics
- 2 Personal Knowledge and Study Participation
- 3 The Everyday Ethics of Human Research
- 4 The Hidden World of Subjects: Rule-Breaking in Clinical Trials
- 5 Participants as Partners in Genetic Research
- 6 Terminally Ill Patients and the "Right to Try" Experimental Drugs
- 7 Embedded Ethics in Developing Country Research
- 8 Research Subjects as Literary Subjects
- 9 How to Hear Subjects
- Index
A propos de l'auteur
Rebecca Dresser has taught medical and law students about legal and ethical issues in biomedical research, end-of-life care, genetics, and related topics since 1983. From 2002-2009, she was a member of the President's Council on Bioethics and from 2011-2015, a member of the National Institutes of Health Recombinant DNA Advisory Committee. She is the author of When Science Offers Salvation (2001), editor of Malignant (2012), and co-editor of The Human Use of Animals (1998, 2nd ed. 2008) all published by Oxford University Press.
Résumé
The research ethics system was created without the help of people who know what it is like to be a research subject. This is a serious omission. Experts have overlooked ethical issues that matter to subjects. Silent Partners moves subjects to the forefront, giving them a voice in research ethics.
Texte suppl.
Much scholarly writing seems like a bare tree festooned with strings of citations. Dresser's argument flows on its own, and the reader can travel on its currents; the references help guide the flowwithout demanding notice. What this accomplishes is straightforward: it makes the book accessible and potentially interesting to many audiences, from institutional review board (IRB) reading groups to students at many levels to clinicians learning to be investigators.
