Faith group members are just as likely as anyone else to suffer from infertility or debilitating genetic conditions, and to seek medical help. For those people whose religious identity is important to them, knowing about the relevant guidance of their own particular faith group will be important. But what happens if they can’t find that information? Or if their own ethical evaluation of what it’s right to do differs from their faith’s official position? The findings from our investigation of these questions may not make very comfortable reading for faith leaders.
Advances in health and life sciences mean that the repertoire of biomedical technologies available to diagnose, and often treat, genetic conditions and infertility is ever expanding. New reproductive and genetic technologies (NRGTs) now range from the rather familiar terrain of in vitro fertilization and prenatal genetic diagnosis, through to complex and much more unfamiliar interventions such as mitochondrial donation, or so-called three parent babies – a potential treatment that has recently and controversially been in the news, as a public consultation on its regulation gets underway.
As a group of researchers at Newcastle and Durham Universities, we have been investigating these and other questions with the help of people from the Christian and Muslim faith communities. The project, entitled Faithful Judgements: the role of religion in lay people’s ethical evaluations of new reproductive and genetic technologies, was funded by the Economic and Social Research Council from October 2011 to January 2014. The project did not aim to provide a comprehensive survey of opinion across these faith groups, but rather to see what sorts of experiences, processes of ethical evaluation, and difficulties might be common to people of faith encountering NGRTs, and to identify points of concern and interest for further investigation.
Most of the participants we spoke to struggled to find relevant information or guidance on their faith group’s position. Sometimes this was because the group actually holds no official view, and leaves it very much up to personal discernment: this was generally true of Anglicans. Less positively, it could be because the faith group thinking and teaching was trailing a long way behind the technology. Often, our participants acknowledged this; we frequently had statements along the lines of, “The church needs to get its act together” or “The imams think that good Muslims don’t do things like this [e.g. egg donation]; but we do do things like this”. Our Roman Catholic participants had the (rather mixed) blessing of access to a set of clear statements on assisted conception. These participants often struggled with their church’s firm position, and sometimes chose to reject it, but at least they knew that they were going against Catholic teaching. Many participants from other Christian denominations or faith groups faced enormous difficulty in finding relevant information and guidance.
The people we spoke with had important things to say about the relationship between faith groups and their members, and about the experience of being a religious believer in the health care system today; some of what they said is very striking, and may be uncomfortable hearing for faith group leadership. Most of our participants, for example, felt that far from being a comfort at a difficult time, on the whole their faith presented them with additional questions that a nonbeliever might not have to grapple with: the classic questions of religious ethics of why this was happening to them, despite being what they felt was a ‘good Christian’ or ‘good Muslim’, which inevitably led to broader theological questions of why God allows suffering to happen at all. Several acknowledged that the experience had profoundly challenged their beliefs, though many of these went on to say that ultimately they had emerged from it with a deeper, more mature faith. This was not always the case, however, and some of our interviewees were still very much grappling with the shaking of their belief structures.
If they chose to use a NRGT, most people were very positive about the clinical care they received. But one very clear finding was that they also felt that they were not encouraged to raise any faith concerns in the clinic, and believed they were seen as ‘difficult’ by the care team if they did. These people wanted access to clearer guidance, available in clinics and surgeries, on who they could contact for authoritative help on their faith group’s position on particular NRGTs. Some participants remarked that these sorts of situation – where biomedical technologies are being used to overcome infertility, or to prevent the birth of a child with a genetic condition – were not automatically seen by the hospital or clinic as needing the support of a chaplain, unlike end of life decisions, for example. Yet both our Christian and Muslim participants were saying that, although they didn’t want to be told what to do, they did need some kind of spiritual accompaniment in going through a difficult process. They wanted easier access to healthcare chaplains with up to date information about the technology, knowledge of the religion, and pastoral experience in guiding people in their situation.
These are important, pressing, and increasingly urgent questions. Religious people encountering NRGTs often feel abandoned by their faith group organization and alienated from their faith communities. The increasing range and sophistication of biomedical technologies has not been matched by an equal development of resources and guidance for people of faith confronted with making decisions in these areas, or even just making their minds up about how they feel about new health and life science technologies.
The Faithful Judgements team is Professor Jackie Leach Scully, Newcastle University; Dr Jackie Haq, Newcastle University; Professor Sarah Banks, Durham University; and Dr Robert Song, Durham University. They are currently analysing the data, and working with the Church of England’s Archbishop’s Council to produce information for chaplains and patients. They are open to anyone who wants to get in touch with us with ideas for ways to take this research forward and ensure it makes the fullest possible contribution to enriching the debate around faith and bioethics in the UK today. For any further information please contact Professor Jackie Leach Scully on Jackie.firstname.lastname@example.org.
The 10th Norman Autton Memorial Lecture, given by Jackie Leach Scully to hospital and healthcare chaplains in October 2013, is also available here.
Jackie Leach Scully is Professor of Social Ethics and Bioethics in the Policy, Ethics and Life Sciences Research Centre (PEALS) at Newcastle University. Originally trained as a molecular biologist, she has worked in bioethics in Switzerland and the UK. Her research interests include the ways in which different lay and professional groups make moral judgements about new health and life science technologies; disability and bioethics; feminist approaches to bioethics; and ethics in situations of conflict or disasters.