Lienkie Diedericks reports from the 25th Annual Conference for Medical Law – August 5th-9th, 2019 Tokyo, Japan

This blog post was written by Heilien (Lienkie) Diedericks, PhD candidate in Global Health & Social Medicine.

From the 5th to the 9th of August 2019, I had the pleasure to attend the 25th Annual Conference for the World Association for Medical Law (WAML) in Japan, Tokyo. It was a vibrant meeting consisting of more than 200 delegates from all over the world. One of the central aims of the 25th meeting was to ‘construct a bridge between medical law, bioethics and legal medicine’. Consequently, while most of the presentations were from a legal perspective, almost each paper attempted to tease out ethical implications arising from within (and without) their chosen legal frameworks. What was striking, however, was the absence of bioethics and medical ethics scholars both in presenting and attending the conference. I was one of the few presenters with a mainly bioethics/ethics background, and I found some of the legal discussions touching only superficially on ethically complex issues. As such, I believe this conference illustrates anew the need for sustained interdisciplinary collaboration between the medical legal profession, bioethics, and the medical humanities.

My own presentation focussed on the ethical implications of regulating pharmaceutical drugs embedded with digital sensors in a rapidly evolving digital health regulatory environment. I concluded that ethical dilemmas occur at a number of junctions in the regulation of Abilify Mycite, the first ‘digital pill’ to be approved by the Food and Drug Administration (FDA). It seems that little ethical deliberation was given about the effects that such a product might have on patients, and if the potential benefits would exceed potential harms. Indeed, the FDA released no guidance on the ethical use of Abilify MyCite. An ethical risk-benefit analysis is blatantly missing when one considers that Abilify MyCite was never approved by the FDA to improve medication-taking adherence – precisely one of the supposed benefits to patients. Furthermore, the way that Abilify MyCite was regulated through the FDA 510(k) process highlights how current regulation and policy lags behind a rapidly evolving digital health sector. Such a lag in regulation could lead to ineffective and potentially harmful approvals. It is therefore crucial that ethicists and regulatory specialists alike take up the challenge to address the rapidly evolving regulatory landscape of digital medicine more broadly.

My presentation was well-received, and I was awarded the 2019 Young Scientist Award for Outstanding Presentation – one of the two awards given annually to a researcher under the age of 35. ImageThe paper on which my work is based has also gone through for consideration for the Davies Award, a larger prize which will be decided upon at the 2020 Annual WAML Conference in Toronto.

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Lienkie Diedericks (right) at the WAML conference in Tokyo, Japan August 5th-9th, 2019

Attending this conference, with the generous funding of the Institute of Medical Ethics, is one of the many opportunities that has resulted from completing the MSc in Bioethics and Society at King’s. The strength of the work produced at the GHSM is that it is sensitive to the narratives of those affected by biotechnologies and medical issues more broadly, and that it is interdisciplinary. This approach to research chimes well with the conference’s opening address by Prof Rihito Kimura: a moving call to action. A survivor of the Hiroshima bombing during the Second World War, Prof Kimura traced his life-story as it intersected with emerging biotechnologies. He stressed the importance of researchers to pay close attention to the narratives of persons ‘on the ground’, thereby ensuring that our academic theory and research is grounded in an ethical sensitivity which permeates every decision. He ended his opening address with an affecting poem, ‘When We say Hiroshima’ by Sadako Kurihara. I conclude with a short extract:

For the gentle response, “Ah, Hiroshima,”

we would have to abandon our weapons as we were supposed to do so,

We would have to get rid of the foreign military bases in Japan.

Until that day,

Hiroshima will remain a city embittered by cruelty and distrust.

We will remain a pariah scorched by radioactivity.

For the gentle response, “Ah, Hiroshima,”

We must first cleanse our soiled hands.

About the author

Heilien (Lienkie) Diedericks is a PhD candidate in the Department of Global Health & Social Medicine. Her research is part of the Health System Strengthening in Sub-Saharan Africa (ASSET) project. Her PhD is funded generously by the NIHR ASSET grant and the Oppenheimer Memorial Trust (South Africa).

Lienkie completed a MSc in Bioethics and Society at King’s, with her dissertation focusing on the ethical and regulatory implications of pharmaceutical drugs being embedded with ingestible sensors to track adherence.

Lienkie has written for the Guardian about the digital pill. You can read her piece here:

https://www.theguardian.com/commentisfree/2019/feb/13/digital-pill-doctor-nhs

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Congratulations to Dr Rose Mortimer, Bioethics & Society alumna, now a doctor in philosophy and a published author!

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Dr Rose Mortimer, Bioethics & Society alumna, who was recently awarded her DPhil from the University of Oxford

Congratulations to Rose Mortimer Bioethics & Society alumna (class of 2016) for getting herself a PhD from Oxford, and for publishing a paper in the latest issue of the Journal of Bioethical Inquiry discussing the findings of her Master’s dissertation!

Dr Rose Mortimer recently completed a DPhil at Oxford  University under the supervision of Professor Ilina Singh (Department of Psychiatry) and Professor Mike Parker (Ethox Centre).

Dr Mortimer’s DPhil research is an empirical ethics study of parenting support delivered within a UK prison mother and baby unit (MBU). Through a combination of interviews, focus groups, and participant observation Rose explores the ‘moral world’ of the MBU. The thesis examines how the dual values of justice and care shape the ways in which parenting support is understood, delivered, and experienced in the context of relationships between mums and staff members in a prison environment. You can read more about Rose’s DPhil research here, and read her AJOB article : Rose Mortimer, Alex McKeown & Ilina Singh (2018) Just Policy? An Ethical Analysis of Early Intervention Policy Guidance, The American Journal of Bioethics, 18:11, 43-53, DOI: 10.1080/15265161.2018.1523491

For her Master’s dissertation in Bioethics & Society Rose conducted a different piece of qualitative research that examined the accounts of five “mostly recovered” ex-patients who had experienced transition between two or more eating disorder diagnoses. Rose’s research study found that, in the minds of participants, the different diagnostic labels were associated with various good or bad character traits. This contributed to the belief in a diagnostic hierarchy, whereby individuals diagnosed with anorexia nervosa were viewed as morally better than those diagnosed with bulimia nervosa or binge eating disorder. Consequently, diagnostic crossover from a “better” to a “worse” eating disorder was often experienced as shameful moral failing, and a new diagnosis impacted the individual’s sense of self-identity. These findings are of significance for both ethicists and clinicians; the paper concludes by outlining the relevance and possible clinical implications of shame in diagnostic crossover and suggesting avenues for future research.

The study resulting from Rose’s Master’s dissertation has been published in the July 2019  issue of the Journal of Bioethical Inquiry as a paper titled “Shame, Diagnostic Crossover and Eating Disorders” and can be accessed here:

https://link.springer.com/article/10.1007/s11673-019-09923-3

Rose is part of the UK Postgraduate Bioethics Committee. You can follow her on twitter @RoseMorts

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Congratulations to Andrew Barnhart for his appointment as a Marie Curie Research Associate and PhD candidate in Biomedical Ethics and Law at KU Leuven!

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Andrew Barnhart, Bioethics & Society class of 2016

Many congratulations to Andrew Barnhart (Bioethics & Society, class of 2016), who recently obtained a position as a Marie Curie Research Associate at the Interfaculty Center of Biomedical Ethics and Law at KU Leuven in Belgium! Andrew will soon begin his Doctoral studies in September 2019 on a project surrounding the ethics of organoids as part of Organovir – an international consortium of academics, scientists, and early career research scholars. Here’s what Andrew had to say about the new adventure ahead:

“Recently, I obtained the opportunity to research the ethics of organoids at KU Leuven in Belgium. Thanks to my education and experience at King’s College London, I am now able to do research on cutting edge biotechnology and will eventually obtain my Doctorate. I am beyond excited to begin this new adventure!

Organoids are miniature organs or tissues made from stem cells. Scientists can now grow miniature pieces of hearts, kidneys, guts, lungs, and even brains from stem cells found in embryos or in adult patients. Organoids are a new biotechnology that can be used to study human biological development, virology, regenerative medicine, and many other forms of research. There are a lot of hopes for organoids, especially within the realm of personalized medicine. Scientists in the future could tailor treatments more specifically to patients if they can use their stem cells to create these organoid structures and study development and disease. One of my goals in this research is to consider the moral status of these organoids and ask questions such as: How are organoids morally distinct from stem cells or embryos? Do miniature brain organoids have a special moral category over liver or heart organoids? What is the best way to use this new biotechnology in the future? and Who gets priority for the use of this new biomedical technology?

The second goal with my research is to consider what implications organoids have on the use of research animals. Will this new biotechnology eliminate the use of animal models and allow scientists to move forward on giving research animals more rights? Will this biotechnology increase the likelihood of chimera research (the combining of two different kinds of animal tissues and/or DNA)? Hopefully these questions can be answered and direction can be given within the public policy sphere! Part of the program will involve working with the National (Dutch) Institute for Public Health and the Environment and the Dutch Society for the Replacement of Animal Testing.

I know that my Bioethics & Society studies at King’s College London prepared me for the work ahead. I owe a lot to the faculty and staff in the Department of Global Health & Social Medicine. Not only is the quality of the education amazing, but my mentors are the best I’ve ever met. They really care about your success and well-being, even long after you graduate from the programme. Dr. Silvia Camporesi, and so many others, deserve more praise than words can give.

In fact, I came across this PhD opportunity through the network I built at King’s. The connections you make are strong and caring in the best possible way. In my initial interview for the position, I told the search committee that I am not bringing only myself to Leuven. I am bring an entire network of highly recognized international researchers and scholars with me. There is little doubt that this network will come in handy later on in my research and beyond.

As an American, I am not afraid to look abroad for opportunity. Especially since moving to London for the Master’s program was the first time I ever lived abroad. It gave me the confidence to keep looking internationally for bioethics opportunities. I feel so welcomed by the international community! If you are considering the Bioethics & Society programme at King’s College London, you will not regret being part of it. The programme is eye-opening, mind-blowing, and, if you let it, life changing. New opportunities and deep ethical questions await you there, as they now do for me in Belgium.”

Applications for the Bioethics & Society MSc programme for entry September 2019 are still being considered. For inquiries contact Programme Director Dr Silvia Camporesi: silvia.camporesi@kcl.ac.uk

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John Harris’ Seminar Wednesday June 5th 12 pm “Xenia: Refugees, Displaced Persons and Reciprocity”

Don’t miss this talk on Wednesday!

 

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Professor John Harris, visiting Professor for the Bioethics & Society MSc

Visiting Professor John Harris will give a very timely paper given the rough geopolitical times we are living in:

 

“Xenia: Refugees, Displaced Persons and Reciprocity”
When: Wednesday 5 June 2019, 
12:00 to 13:30

Where: Room S0.11 Strand Campus

Abstract:

This talk is a small part of a book project tentatively called: “Where do I belong? Where does this belong?” and will deal with nationality, migration and displaced persons and things.

In this particular instantiation, I will ask the following question and give, I hope, some ideas which provide a solution. What has happened to our culture today that strangers to our shores are not welcomed, not given the protection of our laws and the warmth of our hospitality? What has happened to civilization? Refugees, displaced persons and desperate would-be migrants are treated as creatures of no consequence, no interests and no rights?

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Odysseus of Ithaca

Britain, a nation built on migration: Celts, Saxons, Romans, Danes, Normans, Huguenots, Jews, West Indians, Asians from India, Pakistan, Ceylon (Sri Lanka) Singapore, and so many others; has turned its back on contemporary strangers and on ancient values. To understand this tragedy, and both the origins and possible solutions to its disastrous effects, we need to start in the bronze age, nearly three thousand years ago, with one of the most complex and human of humans ever imagined, Odysseus of Ithaca.

This seminar is open to all – NO NEED TO REGISTER – just show up!

About Professor John Harris

John Harris is Visiting Professor in Bioethics in the department of Global Health & Social Medicine at King’s College London, where he teaches in the MSc in Bioethics & Society.

Educated at the University of Kent and at Balliol College, Oxford, Prof John Harris is the author or editor of twenty-one books and over three hundred peer-reviewed articles.

From March 2004 to July 2011 John was the joint Editor-in-Chief of the Journal of Medical Ethics, the leading journal in medical and applied ethics. John has also served on many advisory bodies, including as a member of the United Kingdom Human Genetics Commission (HGC) from itjohn-harris-value-lifes foundation in 1999 until 2010 and as a member of The Ethics Committee of the British Medical Association for more than fifteen years. In 1986 John jointly founded (with Margaret Brazier) the Centre for Social Ethics and Policy of the University of Manchester, one of two leading centres in bioethics in the UK (the other being the Centre for Medical Ethics and Law at King’s), as described by historian Duncan Wilson in his 2015 book, The Making of British Bioethics.

John has, throughout his career, defended broadly libertarian – consequentialist approaches to issues in bioethics. This has made him a leading defender of the rights of the individual to access medical technology and to benefit from medical services. He has defended the individual’s entitlement to these goods and services regardless of age, life expectancy, level of9780198707592 disability, quality of life or genetic pre-disposition to illness. He has been and remains a leading critic of paternalistic or restrictive approaches to regulation or legislation of access to medical services or technology.

Some of John’s papers and books have become seminal to the bioethics canon, i.e. “The Survival Lottery” (1975), The Value of Life (1985) (John is now working on The Value of Life 2), Wonderwoman and Superman (1992) and Enhancing Evolution (OUP 2007). His most recent book, How to be Good, was published by Oxford University Press, Oxford in 2016 and is poised to take its place right alongside his other groundbreaking works.

John has made many appearances in the media over his career, helping to shape public discourse around challenging bioethical topics. In 2017 he was appointed visiting Professor in Bioethics in the department of global health & social medicine, where he contributes to the teaching of the MSc in Bioethics & Society.

Applications for the Bioethics & Society Postgraduate Programme for entry September 2019 are open. For inquiries contact the MSc Programme Director Dr Silvia Camporesi: silvia.camporesi@kcl.ac.uk

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