Issue 12 Winter 2017www.stmarys.ac.uk

CBETBulletinNewsletter for the Centre for Bioethics & Emerging Technologies

At a glanceEngaging in the bioethics conversation 1

Equipping the next generation 2

Human dignity and our common humanity 3

Flying the St Mary’s flag for bioethics 4

There have been quite a lot of changes at CBET since our last newsletter. Prof Geoffrey Hunt returned to Surrey University last year and I have now replaced him as Centre Director. Dr Allyson Purcell-Davis, Senior Lecturer in Media Studies has joined as the latest new team member. Allyson has a special interest in how bioethical issues are portrayed in the arts and media and now regularly lectures on the MA bioethics programme. Other team members all have reports elsewhere in the newsletter.

Our associate staff, Prof David Jones and Prof Calum Mackellar retain their important contribution to the Centre’s work.

During the summer we had our first work experience student. Bethan Lever from Waldegrave School in Twickenham joined us for several weeks and writes about her experience in this edition.

We have also had visiting guests for three public lectures over the year. Prof Calum Mackellar from the Scottish Council on Human

Bioethics gave a fascinating account of the latest developments and possible future ones in the field of neuroethics, followed the next semester by Prof Vincent Müller from Thessaloniki University, who addressed the topic of the ethics of handling big data in healthcare and whether it is reasonable in the age of big data to expect confidentiality. The audio recording of this lecture and the accompanying PowerPoint slide deck are available at www.stmarys.ac.uk/events/2017/04/cbet-seminar.

The final lecture of the year was given by Prof David Oderberg from the University of Reading following on from his recent controversial article in the Journal of Medical Ethics on conscientious objection in healthcare and elsewhere. He argued for the right of freedom of dissociation and the video of his presentation is also available on the University’s YouTube channel – www.youtube.com/watch?time_continue=3&v=fi9QmvGYpYA.

A completely new venture during 2017 was the hosting of a 3 day art exhibition entitled “A Graceful Death” aspects of which Dr Pia Matthews recounts later in this bulletin.

The final event of the year was a full house for the launch of a new book from Cambridge University Press entitled “Euthanasia and Assisted Suicide: Lessons from Belgium” which arose from the conference on the topic hosted here in 2016. The conference report can be read and downloaded from the Anscombe Bioethics Centre website here: www.bioethics.org.uk/BELGIUMCONFERENCEf.pdf.

Over the course of the year I participated in a fascinating conference in Doha on Islamic perspectives on genomic editing and Matt James and I both spoke at and chaired sessions at the annual Cambridge Consortium for Bioethics Educators in Paris in June.

The New Bioethics which is edited by Centre staff has also had a very successful year with the first issue of the year on personalised medicine, guest edited by Prof Josh Hordern of Oxford University. This edition gained very high numbers of hits online and one of the papers on the cost of cancer drugs gained some national press coverage. There is more on the journal in this bulletin.

With the new team now settled in, we look forward to a programme of increased numbers of public seminars and the graduation of several of our MA and PhD students in 2018.

Dr Trevor Stammers Director, CBET

Engaging in the bioethics conversation

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Centre for Bioethics & Emerging Technologies (CBET)St Mary’s University Waldegrave Road, Strawberry Hill, Twickenham TW1 4SX

Euthanasia and assisted suicide: lessons from Belgium

Flying the St Mary’s flag for bioethics

A new book stemming from a conference held at St Mary’s has recently been published by Cambridge University Press. Edited by Profs David Jones and Calum Mackellar, both members of staff at CBET, and Prof Chris Gastmans from Leuven University, Euthanasia and Assisted Suicide: Lessons from Belgium explores in depth what the effects have been in Belgium of the legalisation of doctors ending patients’ lives or assisting them to do so.

The book reports that monitoring of cases in Belgium is far from optimal with just 16 members of the euthanasia commission overseeing thousands of euthanasia cases, the numbers of which have risen sharply since 2002 when euthanasia was legalised.

The authors express concern that more and more cases of euthanasia of those not specifically requesting it are being carried out as well an increasing numbers of cases being of patients with psychiatric illness or of those just “tired of life”. They quote a leading palliative care doctor sympathetic to euthanasia, who warned in 2013 that “once the barrier of legalisation is passed, [euthanasia] tends to develop a dynamic of its own and extend beyond agreed restrictions.”

Dr Trevor Stammers, Co-Director of CBET has a chapter in the book about organ donation following euthanasia. Speaking of the book, Dr Stammers said, “I share the concern of many close observers of what is happening in Belgium that organ transplantation from those agreeing to donate organs after requesting euthanasia can easily lead to other vulnerable people perceiving pressure to end their lives in order that others may have their organs.

“Furthermore, some bioethicists are already suggesting that euthanasia of cases willing to donate should be carried out by organ removal instead of lethal injection, so that organ preservation can be optimised before transplantation.”

A launch of the book was held in the Senior Common Room at St Mary’s on 3rd November and drew together a broad cross section of interested parties. Profs David Albert Jones and Calum MacKellar, and Dr Trevor Stammers, made short presentations based on the book’s findings, followed by a panel Q&A session. Further details on the book can be found at www.cambridge.org/core/books/euthanasia-and-assisted-suicide/04DB39E82767432D2B3E2DDC8FBE7EA5#.

CBET was certainly well represented on the programme at this year’s annual Cambridge Consortium for Bioethics Education, the seventh such global gathering in Paris for bioethicists. Trevor Stammers, Co-Director of CBET chaired and presented at the first session of the conference and Matt James Programme Director of the MA in Bioethics and Medical Law chaired the second session and presented on the second and third day.

The involvement of the arts and humanities in bioethics education was a major theme this

year and the first presentation was given jointly by a consultant paediatrician at the Children’s Hospital in Melbourne and the director of the city’s Ian Potter Art Museum. As part of their ethics education, medical students visit the gallery and are asked to reflect upon a particular piece of art and relate it to their medical studies and the ethics of patient care. Delegates were then divided into groups and given a photograph or painting on which to do the reflection exercise for themselves. A drawing of a family by Henry Moore was the first to be examined and led to interesting questions about child autonomy and who decides when parents disagree on medical treatment. Later a photo of a retired and sad- looking Dame Nellie Melba gazing pensively at one of her beloved pet birds in its cage led to questions about what constitutes human freedom and happiness and how the losses of growing old might be mitigated.

On the last day of the conference there was a presentation on teaching bioethics using opera. A clip from the recent opera Silent Night about a Christmas truce in the trenches in Word War 1 was used to introduce questions about alienation and how this may be overcome. Often patients and doctors speak in different languages metaphorically; this opera was sung in 5 different languages and demonstrated clearly how attempting to find points of commonality in diversity is not easy and often takes an emotional toll and can be a cause of moral distress.

I presented an example of how poetry highlights the effects of different pedagogies in

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Her journey and that of her partner were captured in a series of paintings that ended when Antonia’s partner died in 2001. Inspired further, Antonia was asked to paint other people who were also facing their last journey and who wanted to leave some kind of legacy behind.

In allowing themselves to be painted at what many might say was their most vulnerable moments, many of Antonia’s subjects found a new voice and a way to express not only who they are but also what really matters to them. Anger, denial, grief, loss and bereavement lie at times implicit, at times explicit, behind these picture journeys. However acceptance, a sense of peace, even in some cases a sense of joy and hope, are also clearly present and intensely expressed.

The exhibition was open to the public and Antonia gave personalised tours to groups of students studying on the MA Bioethics and Medical Law programme and the Foundation Degree in Healthcare Chaplaincy. How we face dying and death, how we cope with grief and bereavement are significant questions for us all. The exhibition, which took place in Dying Matters Awareness Week, was part of a project to encourage people to talk about dying, to have the conversation about what matters to them.

At the exhibition CBET was fortunate to share a platform with the Art of Dying Well, an important initiative from the Catholic Bishops’ Conference of England and Wales. Impressions from the exhibition have been lasting and if you missed it the first time round, CBET plans to organise another event like this in 2018.

Dying gracefullycontinued from page 2

medicine. Two contrasting poems by the surgeon poet, Richard M Berlin, were presented to illustrate how a climate of fear and coerced response induces anxiety in students whereas a climate of trust and engagement can promote success and pride in their achievements.

Matt James in a session on assessment in bioethics education, made full use of this recent experiences of leading the MA programme through a successful revalidation this past year by giving a synopsis of the ups and downs of that journey and setting delegates the task of devising an assessment for the topic of stem cell research. The four groups came up with very different ideas, all of which tested knowledge but only one tested relevant application of that knowledge in a way which many students of the subject are likely to face in real life namely making a grant application.

A development emerging from the Consortium is an international network of working groups. These groups are composed of people from institutions around the world working together to develop bioethics education in their countries. The final session of the Consortium focused on short reports on the varied activities of the Working Groups. As chair of the UK working group, Matt shared on some potential future ideas the working group is considering. It was clear from the feedback sessions that diversity between bioethics and other disciplines is something that makes the network unique and at its core there remains a steadfast commitment to break out of the bioethics ‘silo’ and build fresh and collaborative links with other disciplines.

Dr Trevor Stammers

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MJ: Bethan, it has been good to get to know you recently. Tell me a little about yourself. My name is Bethan, and I am 17 years old. I have always wanted a career in science and with chemistry being my strongest and favourite subject I knew I had a good starting point.

At school, we’re often encouraged to pursue things we’re good at but I wanted an opportunity to experience a new area of science, one that isn’t taught in the curriculum. My searching led me to CBET and making enquiries as to whether I could spend my work experience at St Mary’s.

MJ: What are you currently studying at college? I am currently at sixth form and am studying for A levels in Biology, Chemistry, Maths and German, all of which are hard work but definitely the subjects that will help me in any career I choose.

MJ: You’ve spent your work experience with CBET. What kind of activities have you been involved with?I had the pleasure of spending 4 days with CBET, and I can safely say that there was never a dull moment! As I was unsure as to the precise role I was truly interested in pursuing within the field of science, I decided to get in contact with Dr Stammers and see if a placement with CBET would be a possibility. During my time here, I reorganised the CBET library, observed a

Bioethics, human dignity and issues concerning people with disabilities were given significant airing at two very different major international events that took place in September and October this year.

In September I spoke at a parallel session organised by the International Congress of the European Society for Catholic Theology in Strasbourg, as part of their conference on the broad topic of ‘The Challenge of Fraternity’. The question of friendship and people with disabilities has high currency in disability studies, even though it has already been identified as problematic on two accounts. First, there is the issue of reciprocity, notably when it comes to people with profound cognitive disability.

Secondly, the statistics point to high levels of isolation, discrimination, bullying, hate and mate crime, and even systemic abuse in society. While notions of friendship find it difficult to deal with both of these two accounts, and indeed in some versions friendship may create a ‘them and us’ mentality, fraternity has deeper connotations than friendship. The theme of fraternity gave me an opportunity to speak about human dignity

Human dignity and our common humanity One of CBET’s aims is to equip healthcare professionals, teachers

and others with the important ethical aspects of medicine and associated technologies, taking into account their social, legal and spiritual dimensions. Early on in the year, we received a request from a local sixth form student enquiring whether she could spend her work experience with us. We were therefore delighted to welcome Bethan Lever to St Mary’s in July. Matt James caught up with Bethan to find out more about her placement.

Dr Pia Matthews

practice for a conference on using creative writing in teaching and even managed to meet the Vice Chancellor – all on my first day! I was lucky enough to be able to go to a viva meeting for PhD students and to learn about the structure, patience and dedication needed to complete PhD study.

Recently, there has been great media interest in the case of Charlie Gard, which led to a talk with Dr Pia Matthews about the ethical considerations needed when forming a personal viewpoint on the situation; the case is definitely more complicated than it seems at first glance. As this was a busy time for Dr Stammers with radio and TV interviews, I spent a while with him after the discussion, listening to one of his radio interviews, and learning about media presentation skills, including how to answer questions from a completely neutral and unbiased perspective. My final day was spent with Matt James where I compiled a list of contact details for UK bioethics centres (of which there are a staggering amount!), and engaged with the CBET Twitter account. I helped to raise the profile of CBET on social media by re-tweeting relevant or interesting articles as well as following other key contacts engaged in bioethics both here in the UK and around the world. It was a fantastic opportunity to gain an insight into the life of academics and the place bioethics has in contributing to the very latest developments in science, technology and healthcare.

and our common humanity, especially in the context of bioethics where there are efforts to screen out disability by screening out foetuses at risk of disability. The dominance of autonomy and utilitarianism promotes speed, function and efficiency over other aspects of being human.

The second conference was organised by the Pontifical Council for Promoting the New Evangelisation in Rome. This conference was given over entirely to questions surrounding people with disability. In a mix of theory and practice there were presentations from leading theologians, including Archbishop Rino Fisichella and Bishop Peter Comensoli from Australia, as well as interventions from the deaf community, Down Syndrome representatives and video testimony from people with cognitive disabilities. The US National Catholic Partnership on Disability and the UK Kairos Forum were well represented. My presentation concerned the theological theme of human beings made in the image of God and living a life in Christ, with the practical themes of Catholic Social Teaching and human dignity, especially where this touches the lives of people with disabilities in the sphere of bioethics.

MJ: What interests you most about bioethics? Bioethics is an immensely broad subject, and is undoubtedly a field growing faster than anyone could have predicted. What interests me most is the conflict between the advance in technology and the ethical implications these developments pose to us as a species and how they shape our decisions and moral judgements. People often rush forward to declare what they have discovered without considering if what they have done is right. The critical assessment of such discoveries is now more important than ever before.

MJ: What one key learning or memory will you take away with you from your work experience at St Mary’s?There is no doubt that work experience at St Mary’s has been an invaluable learning opportunity. My key learning experience has been that nothing is ever black or white. It’s so important to identify, discuss and argue for both sides of an argument. It’s only when doing so, supported by sound scientific evidence, that good ethical decision-making can take place.

MJ: Bethan, thanks so much for sharing your experiences and for all your work during your time with us. We wish you the very best for the future.

The Council had not perhaps expected the numbers that attended the conference: some 430 people. Therefore the ‘private’ audience with Pope Francis for the conference attendees lasted about ninety minutes as the Pope took time to meet each person present individually.

Both these events demonstrate the international concern about disability and in particular the way that disability affects the lives of everyone. Perhaps in bioethics we should be thinking about the way in which our attitudes to disability inform some of our thinking about issues at the beginning and the end of human life as well as our understanding of the human being who is always, whether ‘abled’ or ‘disabled’, a fragile person.

It has been extremely encouraging to see the development of The New Bioethics Journal unfold since its arrival at St Mary’s in 2010. Working with the production team at Taylor and Francis, Dr Trevor Stammers (Editor in Chief) and Matt James (Managing Editor) have seen publication grow from two to three editions per year and an expanding readership from across the globe.

The current issue (23:3) is the first issue that carries more than one paper from the United States. This is a very welcome development and reflects the increasing American readership of the journal.

The journal has always been listed by the Philosopher’s Index but this year saw the journal accepted onto the Norwegian register and the Emerging Sources Citation Index (ESCI). The latter is a particular achievement as being listed here substantially increases the journal’s reach and discoverability as it is part of Web of Science, an online subscription-

based scientific citation indexing service providing access to multiple databases that reference cross-disciplinary research, allowing for in-depth exploration of specialised sub-fields within an academic or scientific discipline.

Commenting on the journal’s success, Dr Trevor Stammers said, “In a climate of many journals competing for both submissions and readership, it is hugely rewarding to see such steady growth of The New Bioethics over the last few years. This would not have been possible without the ongoing support of the CBET staff team”.

In 2018 a special issue of the journal will address the fast developing area of gene editing and will include papers by some leading experts in the field from around the world.

You can subscribe to the journal in either print or online formats, or both. The current issue can be found online, as well as all past editions, at www.tandfonline.com/toc/ynbi20/current.

Equipping the next generation

Following his presentation to the Research Centre for Islamic Legislation and Ethics in April, Dr Trevor Stammers reflects on the Christian and Islamic ethical issues discussed.

The Research Centre for Islamic Legislation and Ethics, sponsored by the generosity of the Qatar Foundation, invited me to present a Christian view on genomic editing at their conference entitled “The Genomic Question and Islamic Ethics” during the first week of April.

I was privileged to be one of a small number of participants from Europe and was fascinated by the large overlap of the ethical issues discussed in my own paper and in those of my Islamic colleagues.

Genome editing in adults with specific diseases caused by single gene mutations holds out real promise for cures with very little ethical concerns other than those common to the introduction of new treatments and such gene editing therapy is to be welcomed and developed.

With regard to the new developments facing us in the field of genomics today, let alone the potential ones not far away, there was much to discuss about ethical dilemmas involved. Just a small selection of the issues covered during the three days of the conference were:• The recent successful births of a ‘three

parent’ boy in Mexico and a ‘four parent’ girl in Ukraine by mitochondrial manipulation of a donor egg and embryo respectively

Genome ethics – Islamic perspectives on the next medical revolution

• The issues arising from early diagnosis of genetic abnormality such as Down’s syndrome by a maternal blood test and whether the aim of eliminating the condition, as Iceland has almost done, is an ethical goal or not

• Increasing global sex selection abortion made possible by sex determination from a maternal blood test. The current ratio of four men to one woman of reproductive age in China, caused principally by sex selection abortion, led to a headline in the world news during the conference of a man in China who has married a robot because there were not enough women

• The entry of meat from genetically engineered livestock into the food chain and its possible adverse effects on human health

• Whether disclosure of ‘incidental findings’ on genetic profiling should be disclosed to the patient or not – such incidental findings could include for example, the discovery that the father of a child is not in fact the biological father – an issue causing great concern in the Islamic world particularly with its emphasis on the importance of lineage.

With regard to the theological approaches from an Islamic and Christian perspective, there were four main areas of commonality in the conference presentations:• The seriousness of commitment to understanding

scriptural texts and how to interpret them• The marked differences even between scholars

of the same faith in their interpretations and often their conclusions about an appropriate ethical response

• The accounts of creation and the Fall in both the Koran and the Bible being crucial to our theological anthropologies

• The aporetic component of our understanding of religious texts

The conference proceedings will be published in due course but my abiding memory of this conference will be one of realisation that Muslim healthcare professionals, philosophers and religious scholars wrestle every bit as much as Christian ones with the issues presented by the genomic revolution which will only accelerate over the next few years.

There is much to be gained by working together where possible on ethical solutions and even where it is not possible, then at least clearly understanding the other’s viewpoint as to why we differ.

The New BioethicsDying gracefullyOn 11th-13th May 2017 CBET hosted an art exhibition in the Waldegrave Drawing Room at St Mary’s. While art may not initially be associated with the work of CBET, this was an exhibition with a difference. Called A Graceful Death the exhibition by artist Antonia Rolls comprised of portraits of people who were dying. The exhibition also included some powerful testimonies, personal stories and final words. Antonia was prompted to paint after her partner was diagnosed with cancer.

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