• Project Dates: From October 2011 to January 2014
• Project Leader: Jackie Leach Scully with Sarah Banks and Robert Song (Durham University)
• Staff: Jackie Haq
• Sponsors: ESRC

Background

This study aimed to explore the processes through which people who identify themselves as ‘religious’ make ethical evaluations of new reproductive and genetic technologies.

While it is widely recognized that new reproductive and genetic technologies (NRGTs) introduce a range of bioethical issues into everyday life, there have been few attempts to characterise the processes by which ‘ordinary’ people -- those who are not scientists, philosophers or religious leaders -- actually make bioethical evaluations and judgements.

The project builds on previous work published in 2006 by Project Leader Jackie Leach Scully and Co-Investigator Sarah Banks, which indicated that lay people’s ethical evaluations may differ significantly from those of professional philosophers or clinicians, and also suggested that people with religious commitments may use distinctive arguments and judgements.

The project focused on members of the Christian and Islamic faith groups.

These were selected primarily because they are numerically the largest according to the 2001 UK census (Christian, 70.6%; Muslim, 3.6%) both nationally and in the regional demographics of the North East, where our empirical research was focused.

Our empirical research includes:

(i) dialogue groups with people from different branches of the faith groups, who have not necessarily had direct experience of NRGTs, sampling as far as possible across genders and ages (from 18 years upwards); and

(ii) qualitative, semi-structured in-depth interviews with people who have had direct experience of deciding for or against using NRGTs, which explored how they had made their decision, the resources they had drawn on, the effect on their faith and their relationship with their faith community, and their experiences as people of faith in the clinical setting. We also interviewed faith group leaders with pastoral responsibilities, to gain an insight into their approaches to mediating their religion’s official teaching.

Project progress

Funding for the project ended on 31 January 2014, having completed 20 interviews with a total of 23 directly affected people, and 18 dialogue groups involving a total of 102 participants (46 Muslim and 56 Christian).

Some of the project findings have been presented at the British Sociological Association’s Sociology of Religion Study Group meetings in 2012 and 2013, to the World Congress of Bioethics in Rotterdam in 2012, and to academic audiences in Berlin (2012), Birmingham (2013), Durham (2013 and Stuttgart (2013).

The findings were also disseminated as a lecture to hospital and healthcare chaplains in October 2013. Download the lecture notes (PDF: 630KB).

On 2nd Sept 2013, a dialogue and dissemination event at Durham University brought together participants and people involved in healthcare policy and chaplaincy work in the UK to discuss the findings. This was attended by 32 people including some project participants, faith group leaders, and representative of faith organisations regionally and nationally, clinicians, policy making and advisory bodies, and research funders.

Some key findings

Sources of religious guidance

Interviewees and dialogue group participants of both Christian and Muslim faith sought the official teaching of the religion, but often found it hard to access information on it, OR found that the faith group had not yet crafted an official teaching.

The internet is becoming a popular, but not always trusted, source of information and of pointers towards more informed opinion, especially mentioned by some younger Muslim participants.

Often the most available forms of religious guidance were not viewed as authoritative. For example some faith leaders were felt to lack knowledge and/or the faith group’s theological responses were regarded as inadequate. Other sources included scripture (rarely specific texts), prayer, and to a limited extent the faith community.

Many interviewees reported there is little direct personal experience or discussion of infertility, genetic conditions or their treatment and diagnosis within faith communities. Most participants felt faith groups are not (yet) engaging with NRGTs or their use by faith group members.

Processes of reasoning and forms of discourse used

In the dialogue groups, participants worked collaboratively to try to understand the nature of the procedures and situations depicted in the vignettes, the ethical issues raised, the relevance of religious teachings and their personal positions on the issues.

They drew extensively on analogies, personal and vicarious experience, and empathy as resources for understanding. Participants engaged in deontological and consequentialist reasoning processes, and also considered the qualities of character, faith commitments and relational responsibilities of the people featured in the vignettes.

Personal experience and the clinical encounter

While most interviewees spoke very positively of the clinical aspects of their NRGT experiences, they felt that the healthcare system was generally unaware of faith issues and the onus was on patients to raise these issues.

Most who mentioned this described faith as being sidelined or neglected, but a small minority felt they had experienced hostility. However, participants also recognized the difficulty for healthcare professionals of raising sensitive issues.

Many interviewees felt that they had had no opportunity in either the faith group context or the clinic to think through their treatment choices from a faith perspective.

Impact on faith

Many interviewees said that their faith had been seriously challenged by the experiences of infertility or genetic testing. Some had found their faith changed and sometimes deepened. They noted the change of perspective was affected by direct experience rather than abstract knowledge.

Faith in the wider society

Most dialogue group and interview participants accepted any divergence between official teaching of faith groups and the wider secular consensus on and regulation of NRGTs as part of the diversity of society. However some felt that faith perspectives were excluded from policy deliberations.

Most said they felt able to introduce their own faith perspective into public debates on NRGTs; however a minority of both Christian and Muslim respondents felt that comments from a faith perspective would be rejected or attract hostility.

Impact

The research has intrinsic academic interest for a wide range of disciplines, especially empirically oriented bioethics and sociology of religion.

The findings have significant implications for effective public consultation and engagement, and should be of major practical value to healthcare professionals, policy makers designing legislation in contested areas of healthcare policy, clinical and research ethics committees, religious bodies formulating their own policies, and patients themselves.

Jackie Leach Scully discussed the project in an interview with the interview with Church Times, the world’s leading Anglican newspaper, on 16 May 2014. Download the interview with Church Times (PDF: 210KB) and read Faithful Judgements on the Westminster Faith Debates blog.

You can read more about the project, including the draft research findings in the‌ research briefing (PDF: 2.7MB).