At a glance Issue 11 Winter 2015 www.stmarys.ac.uk
Editing the Human Genome – A step too far?
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Face Recognition Technology
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CBET Bioethicist at Family Synod
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A Christian Philosophical Theology of Medicine
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CBETBulletin Newsletter for the Centre for Bioethics & Emerging Technologies
Editing the Human Genome A Step Too Far? Prof Geoffrey Hunt expresses concerns about the recent development of a powerful new genetic engineering tool known as CRISPR. Imagine a very fast and cheap technology for altering the human genome permanently and for any purpose and that could be available to any small laboratory run by anyone who can escape supervision and regulation? Science fantasy? Not any longer. CRISPR* technology speeds up current processes of genetic engineering to within reach of a mass production process. CRISPRs are sections of DNA in singlecelled organisms (mainly bacteria) that function as the organism’s immune system by snipping like a scissors at the DNA of an attacking organism such as a phage and killing it. But scientists have learned how to hi-jack this scissors action to snip up and move around sections of any plant or animal DNA, including human, in order to change that DNA and thus change the characteristics. This could be done to get rid of a genetic disease or to enhance an animal for some human purpose. While genetic engineers have been able to change plant and animal DNA for quite some time,
this ‘bacterial scissors’ approach has been called a game-changer by geneticists. Why?
Faster is better?
Because of the speed and efficiency with which it can be done. The approach has the potential to change a slow and expensive process of genetic manipulation into a kind of laboratory mass-production. This widens the range of things that can be done, opens the doors to smaller laboratories worldwide, and presents the feasibility of genetic engineers doing things that were just too slow, complex and expensive to do before. Regulation would almost certainly be very difficult. The possible applications of CRISPR technology are too numerous to list. Geneticists would be able to expand the alteration of the genetic blueprint of humans, livestock, food crops and pests with far greater ease. The possible justifications for doing so are just as numerous, falling into the two general
categories of removing what is harmful or perceived as harmful to human life or enhancing what is perceived as beneficial or attractive. To give some examples: a genetic disease could be eliminated, insect vectors of disease could be wiped out, yeasts and other organisms could be modified to produce biofuels and chemicals, and even human immunity, physical strength, intelligence and beauty (as perceived) could be changed. The widespread application of CRISPR also amplifies the possibilities of biological warfare and permanent germline modification.
Moratorium?
A mechanistic and piecemeal form of application could disrupt the interwoven web of life in unpredicted and unpredictable ways – with no turning back. Already a number of scientists have called for a world-wide moratorium on applying CRISPR to the human germline. In April 2015, scientists from China have reported their attempts to alter the DNA of ‘non-viable’ human embryos using CRISPR to address a genetic disease. In December 2015 an International Summit on Gene Editing in Washington DC concluded that germline editing in humans would be irresponsible until proven safe, but added: “However, as scientific knowledge advances and societal views evolve, the clinical use of germline editing should be revisited on a regular basis”. CRISPR is brand new, only really appearing in the scientific literature as recently as 2013-14. This gives bioethicists and citizens a chance to ethically interrogate its possibilities at an early stage. CBET is planning a roundtable interdisciplinary conference on the ethics of CRISPR in the spring of 2016. Reading: Ledford H (3rd June 2015). “CRISPR, the disruptor”, News Feature, Nature, 522(7554) *Clustered Regularly Interspaced Short Palindromic Repeats CBET Bulletin Issue 11 Winter 2015 | 1
Face Recognition Technology Autonomy, Privacy, Liberty
Ian Berle, alumnus of the MA programme in bioethics and medical law and now PhD candidate, writes about the focus of his PhD thesis and some of the major themes arising from his research. ‘Face Recognition Technology (FRT): Autonomy, Privacy, Liberty’ – this is the final title and subject of my PhD thesis, which examines the ethics of FRT and its effect on autonomy, privacy and liberty upon citizens both by the state and commercial enterprise. For example: surveillance and security by the state, and identity verification by companies. These two uses of FRT divide opinion, the former is associated with a reduction in liberty and is therefore challenged by civil liberty campaigners; the latter is associated with informational privacy that is designed to reduce or even eliminate fraudulent access to personal information. Another use that somewhat combines the two applications is immigration control, and since beginning my research this application has become more pressing given the current refugee crisis and the demand for knowing ‘who’s who’. The thesis discusses the practical, ethical and legal limitations of FRT. I argue that FRT is an adjunctive technology that supports intelligence when used for surveillance purposes and that FRT embodies identification by verifying individuals – and is therefore another tier of the log-in process when requiring access to one’s own personal information.
However, FRT creates personal data and the ethico-legal concerns associated with how the data is used has been much discussed, especially since the American whistle-blower Edward Snowden revealed that intelligence is gathered by the NSA and GCHQ. Since it is now understood that data is being acquired, face recognition is potentially the key that unlocks, collates or aggregates the trail of data and information that is generated by individuals. From the point of view of surveillance in the widest sense, the more complete ‘portrait’ of a person that is thereby provided is an acute privacy issue. Solove [2008:118]1 points out that a piece of data here or there is not exceptionally telling. Yet, when combined, odds and ends of information start to form a personal profile that becomes more significant than the sum of the parts. The consolidated information synergises to create a more detailed profile which the disparate parts do not when isolated from each other. Aggregating data is unquestionably not a new activity, but it is more efficient and increasingly more extensive, and easier to analyse. Consequently, although maybe initially consented because of the convenience afforded, citizens and consumers lose
Mindfulness for Professionals Prof Geoffrey Hunt presented (19 November 2015) the findings of a six-month research project on the effectiveness of mindfulness training for NHS middle managers at an R&D Open Day at Ashford & St Peter’s Hospital, Chertsey on 16th November. Prof Hunt, Director of CBET at St Mary’s provided an intensive ten-week practical course on mindfulness in relation to resilience and compassion to a diverse group of managers as part of a collaborative project with the University of Surrey. An analysis of the results has demonstrated a positive enhancement of professional skills, and thought is now being given to an extension of this feasibility study. The Open Day was opened by Prof Pankaj Sharma, Deputy Chair of Ashford & St Peter’s NHS Foundation Trust. More information can be found at www. ashfordstpeters.nhs.uk/research. Prof Hunt was also invited to speak on the subject at the Sri Lankan High 2 | CBET Bulletin Issue 11 Winter 2015
Commission, London on 21st November. The invitation, from the Association of Professional Sri Lankans in the UK, was to speak on ‘Mindfulness and Wellbeing in Professional Life’ addressing an audience of doctors, lawyers, engineers, accountants, academics, IT and other technical and trade professionals. The Association was formed in 2004 under the patronage of Mr Faizal Mustapha the then High Commissioner of Sri Lanka in the UK. It aims to unite all Sri Lankan professionals living in the UK under one umbrella organisation to promote knowledge transfer between Sri Lanka and the UK. The Association also supports humanitarian causes and helps those in need in Sri Lanka. President of the Association Mr Leslie Dep FRICS MCIArb, said, “Prof Hunt’s topic was very relevant to the environment that current professionals have to deal with in their day-to-day professional activities.”
control and their autonomy is diminished. This is not to paint too bleak a picture. FRT is here to stay. But the contexts in which the ethical and legal implications apply need regular review and there is need for greater transparency by those who acquire our data. Individuals need to be more self-aware about how they disseminate personal information and there is also the need to give individuals in the UK the right to their own image. The need to balance security and liberty will remain for the foreseeable future. Daniel Solove [2008] Understanding Privacy. Cambridge, Massachusetts; London, England. Harvard University Press
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St Mary’s Academics Join Consultation on ‘Healthcare Robots’ Three St Mary’s academics joined a roundtable consultation in London on the subject of robots and other ‘artificial intelligence’ devices assisting with the healthcare of the elderly. The consultation was hosted by the independent think-tank BioCentre at the Royal Society of Arts on Thursday 9th July 2015. Prof Geoffrey Hunt, Dr Elisabetta Canetta and postgraduate student Ian Berle were invited to contribute to the discussion. The roundtable’s brief was to bring together representatives from different faith traditions to explore ideas and values such as ‘human identity’. Prof Hunt opened the session with a presentation on ‘Artificial intelligence: An attempt to transcend the transcendent?’ One emergent theme of the discussion was that while such ‘smart’ devices might physically assist compassionate carers they could not possibly substitute for compassion.
CBET Bioethicist at Family Synod Dr Pia Matthews, lecturer in healthcare ethics with CBET, writes on her role as expert for the Synod of Bishops in Rome. My appointment by Pope Francis as an Adiutrix, Expert, for the Synod of Bishops in Rome that met in October, 2015 has been a great privilege. The subject matter of the Synod was ‘The Vocation and Mission of the Family in the Church and the Contemporary World’. Alongside attendance at all the synod sessions and in my small group, my work involved, amongst other tasks, helping the Special Secretary of the Synod in the preparation of synodal documents. So, at the beginning of October, I set out for Rome. One of my ‘expert’ colleagues was Dr John Kleinsman, Director of the Nathaniel Centre, New Zealand’s Catholic Bioethics Centre. The Nathaniel Centre was named after a baby boy, born with incurable health problems, whose parents faced many ethical issues related to his care. Nathaniel died at less than two months old. The naming of the Centre after Nathaniel demonstrates the commitment that the Centre has to families and those who are vulnerable and who encounter complex ethical situations. Another of my colleagues, who came to Rome as an Auditor, was Dr Moira McQueen, executive director of the Canadian Catholic Bioethics Institute,
Toronto and member of the International Theological Commission. Proudly Scottish, living in Canada, Moira is particularly concerned with community education in bioethics. The presence of bioethicists at the synod was no coincidence. Even though the topic for the synod was the family, it is in families that some of the most pressing bioethical issues are sited: the difficulties of infertility, of reproductive technologies, of exploitation of the poor through ‘wombs for rent’ or the selling of organs, the challenges of disability, and the situation of the elderly who require care. Pope Francis has often spoken out in defence of families and in support of policies that protect human life from its very beginning to its natural end. Moreover, in their final report the synod fathers acknowledged the precariousness in some situations of the right to conscientious objection for those working in healthcare and so gave this right a particular focus. The conviction that human life is a gift to be cherished permeated all of the discussions, especially in view of the contemporary ‘consumer’, ‘throw-away’ culture that sees some human life as redundant, burdensome
or useless. However, the synod fathers went further by advocating that preparation for marriage should include input from people working in bioethics in order to promote a true culture of life. Certainly, for the synod fathers it was a given that the Church should express gratitude to those families who care for people with disabilities and the frail elderly. Nevertheless, every word about vulnerable people was accompanied by the robust conviction that it is not merely a case of the strong supporting the weak. Rather, every elderly person and every person with a disability has a unique contribution to make, not only to the family that surrounds them, but also to the Catholic community to which they belong and indeed to society as a whole. As Pope Francis says in his encyclical, Laudato Si, everything is interconnected, nothing is redundant. We all have a part to play. And that, after all, is what a synod is about: a walking or journeying together (syn) along the way (hodos).
St Mary’s and Climate Change More than 150 world leaders gathered in December 2015 to make a pledge to act on drastically limiting fossil fuel consumption. Prime Minister, David Cameron and US President, Barack Obama were present at this United Nations’ summit marking an historical and global transition to an energy economy without coal and oil. More than 600,000 people in 175 countries marched the weekend before to demand a robust deal to curb greenhouse gases. Ahead of the Paris talks, 183 nations submitted individual commitments to slow global warming. The aim is to limit the average global temperature rise to two degrees, above which, it is agreed by scientists, human society would be in grave danger. To coincide with the Paris Climate Change talks, known as COP-21, St Mary’s Theology department and CBET joined hands in a series of three events. On 17th November St Mary’s University held an interdisciplinary conference on Pope Francis’ June encyclical on the environment, ‘Laudato Si’, in which the issue of climate change was explored as a
moral and spiritual as well as technological and economic one. The conference overviewed the encyclical with speakers from theology, ethics, philosophy, geography, political economy, sustainability and physics. About 50 people attended: community workers, clergy, students, religious, citizens and academics. The conference was opened by Archbishop Kevin McDonald (ret), with a speech on ‘Laudato Si: An Ecclesiological Perspective’. He emphasised that the conference and similar ones before it “should not be standalone events but should somehow be part of an ongoing process, which is the getting of wisdom”. The keynote address was given by Prof Mary Grey, who is Emeritus Professor of Theology at the University of Wales, Lampeter, a fellow at Sarum College, Salisbury and, until 2013, was visiting Professor at St Mary’s University, Twickenham. Her field includes ecological theology and spirituality. A video of the Archbishop’s speech and other conference items are available at www.stmarys.ac.uk/ news/events/event/exploring-laudato-si/. St Mary’s also engaged with a local parish to celebrate St Francis Day and held a special
event around the Pope’s encyclical on Sunday 4th October at All Saints Church, Woodham, Woking. The church’s Fr Ian Forbes opened the free community event at the church. A discussion circle on the encyclical with members of the congregation was led by St Mary’s theologian Dr Ashley Beck and CBET’s Prof Geoff Hunt. Meanwhile the choir practised a version of the Franciscan Canticle for the Evensong Service. In August Pope Francis had instituted a new World Day of Prayer for the Care of Creation, to be celebrated each year on 1 September. This aligns the Catholic Church with the Orthodox churches which have held a day of prayer to celebrate creation on this date since 1989. To mark the celebration of this day of prayer for the first time there was a special Mass in the University Chapel, St Mary’s University, on 1st September. On climate change contact: Geoffrey.hunt@stmarys.ac.uk
CBET Bulletin Issue 11 Winter 2015 | 3
Parisian A Christian Philosophical Poems and Theology of Medicine Gallic Games
Dr Andrew Sloane, a medically qualified theologian and bioethicist from Morling College, Australia spent a six month sabbatical at St Mary’s in 2014. The focus of his sabbatical was to work on his third book which addresses the theological-philosophical basis of medicine.
The annual Cambridge University Press Consortium for Bioethics Teaching has now become one of the “must do” events in the bioethics diary. This year was the fifth event held, the third one at which Trevor Stammers, Programme Director for MA in bioethics at St Mary’s has presented and the first at which Matt James, CBET research associate has participated and led a “test drive” session. The conference is rooted in the realities of teaching students and the sessions consist of two types: 1. 30 minute presentations when innovative methods of teaching, such as a whole bioethics programme with flipped classroom teaching and no lectures, are outlined – along with the pain of change and the challenges which inevitably accompany such bold moves. 2. “Test drive” sessions where the whole group is given a demonstration of the teaching method in action using the delegates as “students”. Dr Stammers in a session entitled ‘Well –versed in medicine?’ spoke about the uses he makes of poems in his bioethics teaching. After a 5-minute introduction, the delegates were split into groups of five or six, presented with a poem which was performed whilst the text was projected on screen. They were then asked to discuss questions designed to open up possible meanings for the poem. Two poems were used – Robin Robertson’s Lithium – a heartfelt cry of a patient being treated with that “psychiatrists’ stone” and Carrie Shiper’s Medical History which begins: I wanted it; arc of red and blue, strobing my skin, sirens singing my praises... The delegates discussed the question of “What is the ‘it’ of the opening line?” and came up with a variety of interesting answers and in the process entered into
Published by T&T Clarke, ‘Vulnerability and Care: Christian Reflections on the Philosophy of Medicine’ will be published in January 2016 and promises to make an important and provocative contribution to discussions surrounding the philosophy of medicine. Medical and bioethical issues have spawned a great deal of debate in both public and academic contexts. Little has been done, however, to engage with the underlying issues of the nature of medicine and its role in human community. Taking this as inspiration for the book, Sloane seeks to fill that gap by providing Christian philosophical and theological reflections on the nature and purposes of medicine and its role in a Christian understanding of human society. The book provides two main ‘doorways’ into a Christian philosophical theology of medicine. First it presents a brief description of the contexts in which medicine is practiced in the early twenty-first century, identifying key problems and challenges that medicine must address. It then turns to issues in contemporary bioethics, demonstrating how the debate is rooted in conflicting visions of the nature of medicine (and so human existence). Discussion then follows on some of the philosophical and theological resources currently available for those who would reflect ‘Christianly’ on medicine. The heart of the book consists of an articulation of a Christian understanding of medicine as both a scholarly and a social practice, by means of the philosophical-theological framework which informs this perspective. It fleshes out features of medicine as an inherently moral practice, one informed by a Christian social vision and shaped by key theological commitments. The issues relating to the context of medicine and bioethics which open the book are returned to, with comment and reflection that demonstrates how a Christian philosophical-theology of medicine informs and enriches those discussions. Commenting on the book, Dr. Trevor Stammers, Programme Director for the MA in Bioethics & Medical Law, said “This really is a ground-breaking book which I heartily recommend. Sloane’s central thesis is that the primary goal of medicine is not healing and alleviating suffering, at the expense of care for the vulnerable, but rather it is to care for the vulnerable including healing and alleviating suffering where possible. He makes a powerful case for the need to change the focus of the practice of medicine before it loses its soul completely”. the experience of the patient conjured by the poem. Ethical issues around the care of such patients were then raised, illustrating how the bridge from poetry to bioethics can be constructed. In his test drive session, Matt James demonstrated the use of the human enhancement card game in helping students move beyond just a theoretical understanding of the ethical and social implications of enhancement, to progress to critical engagement, synthesis and evaluation of the issues. Drawing together a group of six ‘student’ delegates, Matt led the group through the stages of the card game illustrating how each stage contributes to the learning process with
Centre for Bioethics & Emerging Technologies (CBET) St Mary’s University Waldegrave Road, Strawberry Hill, Twickenham TW1 4SX 4 | CBET Bulletin Issue 11 Winter 2015
reference to Bloom’s taxonomy of learning. Commenting on the session, Matt said, “The test drive session was very well received with several delegates keen to use the game in their own teaching. Many realise the need to vary the styles of learning they employ in order to equip students with more than just a head knowledge of the subject but the skills to apply theory to reality”. The feedback both at the conference and in subsequent emails shows that St Mary’s involvement in this conference spreads new ideas in teaching across the globe. The conference founder and ever- generous host, Dr Tomi Kushner, is to be congratulated once more on continuing this pioneering and effective annual feast of ideas.
Tel: 020 8240 4250 Fax: 020 8240 2362 www.stmarys.ac.uk/cbet