Wendy Rogers 1, Heather Draper 2, Jackie Leach Scully 3, Greg Moorlock2
1 Macquarie University, NSW 2109, firstname.lastname@example.org
2 University of Birmingham, Edgbaston, Birmingham B15 2TT, UK
3 Newcastle University, Newcastle upon Tyne, Tyne and Wear NE1 7RU, UK
In this paper, we explore what counts as advocacy and activism in bioethics, and why academic bioethicists may be reluctant activists. There are several recent and current examples of human rights and other abuses within biomedicine and public health, such as credible and mounting evidence that Chinese prisoners of conscience are reverse matched and killed on demand for their organs. How do, and should, bioethicists who become aware of such events respond?
Activism and advocacy may include: i) overt activism in which an individual’s standing as an academic bioethicist adds credibility to their whistle blowing, such as Carl Elliott’s advocacy for the late Dan Markingson, or Peter Singer’s animal rights work and recent effective altruism advocacy; ii) stealth advocacy, e.g. by quietly promoting gender equity policies within one’s institution; and iii) advocacy and activism conducted as a private citizen.
Given the emotive nature of many of the topics tackled by bioethics there is surprisingly little overt advocacy (type i). Why might this be so? First, some issues are framed as political rather than bioethical, apparently ruling them out of scope. Second, professional fatigue or burn out may discourage individuals from taking up bioethical as opposed to other kinds of advocacy as private citizens. Third, institutional pressures generated by conflicts of interest can be powerful dissuaders. There may be concerns about real or perceived loss of academic distance and impartiality if identified as activist, or fear that one’s academic credibility may be undermined. Fourth, advocacy seems a poor fit with prevailing metrics for evaluating academic performance. Finally, there is a potential tension between scholarship and advocacy, given the prima facie commitment of professional bioethicists to explore ideas and concepts without prior commitment to particular outcomes.
We will conclude, with some provisos, that bioethics should include elements of advocacy and activism.
Wendy Rogers works across a range of topics in clinical, research and philosophical bioethics. Her current research interests include the definition of disease and the ethics of overdiagnosis, the ethics of surgical innovation and research, and vulnerability. Her interest in bioethics advocacy stems her grounding in feminist ethics, and includes concerns about conflicts of interest in medical research and clinical care, and more recently, organ harvesting.