People of faith encountering biomedicine
Jackie Leach Scully reflects on faithful judgments.
An ever-growing array of biomedical technologies to diagnose, and often treat, genetic conditions and infertility also present us with difficult ethical issues.
Public debate of different kinds, and a variety of research and surveys, have given us insight into people’s thinking about new reproductive and genetic technologies (NRGTs) and their ethics.
What we don’t have is much information about people who identify as religious and their encounters with NRGTs.
Guidance of faith group
Members of different faith groups are just as likely to suffer from infertility or debilitating genetic conditions as anyone else. People whose religious identity is important to them are likely to want to follow the guidance of their faith group. But what happens if their own ethical evaluation differs from the official position?
In a two-year project funded by the Economic and Social Research Council, researchers at Newcastle and Durham universities have been investigating these questions with the help of people from Christian and Muslim faith groups.
The project, which ran until January 2014, did not set out to give a comprehensive survey, but rather to see what might be common to people of faith, and identify points of concern and interest for further investigation. Qualitative research with a small number of people allowed us to explore topics in depth, and to reveal unanticipated issues.
We held 18 one-to-one interviews with members of Christian or Muslim faith groups who had had to decide whether or not to use an NRGT. Further interviews with faith group leaders explored how well placed they felt to offer information and pastoral care.
We also ran over 20 dialogue groups with faith group members who had not experienced NRGTs themselves. Using scenarios of egg donation for infertility, and preimplantation genetic diagnosis (PGD) to avoid a familial disease, groups explored the issues from a more distanced perspective.
Some of our findings were striking. Most of our participants, for example, said that far from being a comfort at a difficult time, their faith presented them with additional questions that a non-believer might not have to grapple with: asking why this was happening despite being what they felt was a ‘good Christian’ or ‘good Muslim’, leading to broader theological questions of why God allows suffering to happen at all.
Several said that the experience had profoundly challenged their belief, though could also deepen it.
Roman Catholic participants had access to their church’s clear statements on assisted conception, but other participants struggled to find relevant information and guidance. Sometimes this was because the faith group holds no official view and leaves it to personal choice, or (less positively) because the teaching was trailing behind the technology.
Need for guidance
If they chose to use a NRGT, most participants were very positive about the clinical care they received. But they also felt that they were not encouraged to raise any faith concerns in the clinic, and were perceived as ‘difficult’ if they did.
Some participants remarked that infertility or genetic testing were not automatically seen as situations where a hospital or healthcare chaplain would be needed, unlike end of life decisions, for example. On the contrary, these people were saying that they didn’t want to be told what to do, but they did need some spiritual guidance in going through a difficult process.
They wanted better access to healthcare chaplains with up to date information, knowledge of the religion, and experience in guiding people through their situation.
The Faithful Judgements team (Jackie Leach Scully and Jackie Haq of the Policy, Ethics and Life Sciences Research Centre [PEALS], Newcastle; Sarah Banks and Robert Song, Durham) is now analysing the data, and working with the Church of England’s Archbishop’s Council to produce some information for chaplains and patients.
More information on its findings will soon be available from links on the PEALS website. The 10th Norman Autton Memorial Lecture, given by Jackie Leach Scully to hospital and healthcare chaplains in October 2013, is also available.