Where I stand on things

With the recent growth in popularity of extreme right parties and policies in Europe, as well as racist and dangerous leadership in the US, I think it is important for bioethicists to state clearly where they stand on things.

As I have made my views clear in my publications in peer-reviewed academic journals and in the media:

I favour a cautious, democratic and inclusive approach to governing new genetic technologies, which includes a robust public engagement deliberative process.

I am a cosmopolitanist, which means I regard myself as a citizen of the world and I believe in a shared common morality.

I am staunchly against discrimination in all of its forms, based on colour, creed, country, culture, gender, etc.

I favour women’s empowerment, both in society and with respect to their bodies.

Just to be absolutely clear (this will be obvious to those who know me), I strongly oppose Brexit, Donald Trump, and any policy or politician that could threaten freedom, equality and justice.

That is why I am fond of this quote by the late Stephen Jay Gould:

“We pass through this world but once. Few tragedies can be more extensive than the stunting of life, few injustices deeper than the denial of an opportunity to strive or even to hope, by a limit imposed from without, but falsely identified as lying within” (S.J. Gould, 1981)

If you want to read more about what I think:

https://silviacamporesiresearch.org/what-i-think-about/

 

#1DayWithoutUS: there would be NO Bioethics & Society programme at King’s College London w/o our EU nationals

#1dayWithoutUs.jpg

Four EU nationals coordinate and teach the Bioethics & Society programme at King’s College London. From left to right: Dr Silvia Camporesi, Dr Annette Rid, Dr Federica Lucivero and Ms Giulia Cavaliere

Audio-recording now available for JBIN Public Trust in Expert Knowledge panel discussion at King’s, February 8th, 2017

On February 8th, 2017, we held at King’s College London the launch of the Journal of Bioethical Inquiry  Public Trust in Expert Knowledge Symposium.

The panelists were Professor Deborah Bowman, Professor Mark Davis, Dr Maria Vaccarella, and myself.

The audio-recording of the panel discussion is now available here:

More information about the panellists and the symposium below.

Panellists

Dr Deborah Bowman MBE FRSA

Professor of Ethics and Law, St George’s Medical School, University of London, and contributor to Public Trust in Expert Knowledge Symposium

Dr Silvia Camporesi

Lecturer and Director, Bioethics & Society Programme, King’s College London and Associate Editor, Journal of Bioethical Inquiry

Dr Maria Vaccarella

Lecturer in Medical Humanities, University of Bristol and Guest-Editor, Journal of Bioethical Inquiry

Dr Mark Davis

Associate Professor of Sociology, Monash University and Guest-Editor, Journal of Bioethical Inquiry

About the special issue:

This special issue is the first of its kind to examine the ethics of public trust in expert knowledge systems in emergent and complex global societies. Through an interdisciplinary approach, it draws from contributions in bioethics, the social sciences and the medical humanities.

Contributions

 Camporesi, S., Vaccarella, M., & Davis, M. “Investigating Public trust in Expert Knowledge: Narrative, Ethics, and Engagement.”

“Public Trust in Expert Knowledge: Narrative, Ethics, and Engagement” examines the social, cultural, and ethical ramifications of changing public trust in the expert biomedical knowledge systems of emergent and complex global societies. This symposium was conceived as an interdisciplinary project, drawing on bioethics, the social sciences, and the medical humanities. We settled on public trust as a topic for our work together because its problematization cuts across our fields and substantive research interests.

Bowman, D. “The Moral of the Tale: Stories, Trust and Public Engagement with Clinical Ethics via Radio and Theatre”

Trust is frequently discussed with reference to the professional–patient relationship. However, trust is less explored in relation to the ways in which understanding of, and responses to, questions of ethics are discussed by both the “public” and “experts.” Public engagement activity in healthcare ethics may invoke “trust” in analysing a moral question or problem but less frequently conceives of trust as integral to “public engagement” itself. This paper explores the relationship between trust and the ways in which questions of healthcare ethics are identified and negotiated by both “experts” and the public. Drawing on two examples from the author’s “public engagement” work—a radio programme for the British Broadcasting Corporation and work with a playwright and theatre—the paper interrogates the ways in which “public engagement” is often characterized.

Attwell, K., Leask, J., Meyer, S. B., Rokkas, P., & Ward, P. “Vaccine rejecting parents’ engagement with expert systems that inform vaccination programs.” 

In attempting to provide protection to individuals and communities, childhood immunization has benefits that far outweigh disease risks. However, some parents decide not to immunize their children with some or all vaccines for reasons including lack of trust in governments, health professionals, and vaccine manufacturers. This article employs a theoretical analysis of trust and distrust to explore how twenty-seven parents with a history of vaccine rejection in two Australian cities view the expert systems central to vaccination policy and practice. Our data show how perceptions of the profit motive generate distrust in the expert systems pertaining to vaccination.

Buchman, D. Z., Ho, A., and Goldberg, D. S. “Investigating Trust, Expertise, and Epistemic Injustice in Chronic Pain”

 Trust is central to the therapeutic relationship, but the epistemic asymmetries between the expert healthcare provider and the patient make the patient, the trustor, vulnerable to the provider, the trustee. The narratives of pain sufferers provide helpful insights into the experience of pain at the juncture of trust, expert knowledge, and the therapeutic relationship. While stories of pain sufferers having their testimonies dismissed are well documented, pain sufferers continue to experience their testimonies as being epistemically downgraded.

Edwell, J. and Jack, J. “Gestational Diabetes Testing, Narrative, and Medical Distrust”

In this article, we investigate the role of scientific and patient narratives on perceptions of the medical debate around gestational diabetes (GDM) testing. Among medical scientists, we show that the narrative surrounding GDM testing affirms that future research and data will lead to medical consensus. We call this narrative trajectory the “deferred quest.” For patients, however, diagnosis and their subsequent discovery that biomedicine does not speak in one voice ruptures their trust in medical authority. This new distrust creates space for patients to develop a Frankian quest narrative where they become the protagonist in their story.

Anne-Wong, K. “Donor Conception and ‘Passing,’ or; Why Australian Parents of Donor-Conceived Children Want Donors Who Look Like Them

This article explores the processes through which Australian recipients select unknown donors for use in assisted reproductive technologies and speculates on how those processes may affect the future life of the donor-conceived person. I will suggest that trust is an integral part of the exchange between donors, recipients, and gamete agencies in donor conception and heavily informs concepts of relatedness, race, ethnicity, kinship, class, and visibility. The decision to be transparent (or not) about a child’s genetic parentage affects recipient parents’ choices of donor, about who is allowed to “know” children’s genetic backgrounds, and how important it is to be able to “pass” as an unassisted conception.

Note: all articles are available online ahead of print here:

http://link.springer.com/journal/11673/onlineFirst/page/1