Speaking from and to the growing movement among academics to become involved with 'socially-engaged' work, this volume presents first-person case studies of attempts to fix serious ethical problems in medical practice and research. It highlights the critical difference between the pundit approach to bioethics and the interventional approach - the talkers and the doers - and points to how abused and damaged the doers often end up. Chapters cover a diverse set of topics, including the troubling influence of for-profit businesses on public health policy, the politics of exposing histories of unjust medical research, the challenges of patient rights' work in sexuality and reproduction, collaborations between NGOs and academics, methods for changing entrenched yet harmful medical practices, engaging public policy through educating governmental leaders, and whistleblowing. The trending interest in the interplay of academia and advocacy and the growing importance of 'socially-engaged' work by academics make this a timely and much-needed resource.
Author(s): Françoise Baylis, Alice Dreger
Series: Cambridge Bioethics And Law
Publisher: Cambridge University Press
Year: 2018
Language: English
Pages: 190
Tags: Bioethics, Law
Cover......Page 1
Half-title......Page 3
Series information......Page 4
Title page......Page 5
Copyright information......Page 6
Table of contents......Page 7
List of Contributors......Page 8
Acknowledgments......Page 9
1 More than Words......Page 11
2 ‘‘Where There’s Smoke, There’s Pfizer’’......Page 19
The Canadian Institutes of Health Research......Page 21
Concerns about the Pfizer Appointment......Page 23
Mobilizing Senior Leadership within CIHR......Page 25
Mobilizing Ethics People within CIHR......Page 27
Mobilizing the Ethics Community Outside CIHR and the Public......Page 30
Mobilizing Parliamentarians......Page 33
Lessons Learned......Page 39
Postmortem......Page 40
3 ‘‘So What?’’: Historical Contingency, Activism, and Reflections on the Studies in Tuskegee and Guatemala......Page 42
Tuskegee as History, Metaphor, and Memory......Page 43
‘‘Normal Exposure’’: The US Public Health Service Studies in Guatemala......Page 51
‘‘So What?’’ and Social Change......Page 62
4 Twenty Years of Working toward Intersex Rights......Page 65
5 Working with Public Citizen: An Academic-NGO Collaboration......Page 84
Public Citizen’s Health Research Group......Page 86
My Involvement with Public Citizen: The Beginning......Page 88
The SUPPORT Controversy: Working with Public Citizen......Page 90
SUPPORT: The Story Continues......Page 94
The Struggle to Publish......Page 95
A Back Story......Page 100
The Aftermath......Page 104
Conclusions......Page 106
6 Reproductive Technology’s Legacy of Omission......Page 108
7 Establishing Pediatric Palliative Care: Overcoming Barriers......Page 135
8 History and Philosophy of Science Engaging the Public......Page 146
The ASU Model for a New American University......Page 147
Exploring the Larger World......Page 150
History and Philosophy of Science Informing Science and Society......Page 151
Extending the Impact: The Embryo Project in Action......Page 154
Conclusion......Page 158
Acknowledgment......Page 159
9 The Flint Water Crisis......Page 160
Organizing Attention to Flint’s Public Health Needs......Page 164
The Economic and Political Roots of the Crisis......Page 166
Activists Collect Data and Demand Action......Page 169
Why the Failure of Protections?......Page 173
Who Worked Effectively?......Page 176
Index......Page 179
