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Interview: Jackie Leach Scully, biomedical ethicist

16 May 2014

'The spaceships were cool, too'

I'm interested in the ways that people and societies work out the morally right and wrong ways to use - or not use - a new life-science development. Over the years, I've investigated several different biomedical technologies used by different groups of people. I'm based in the Policy, Ethics, and Life Sciences Research Centre at Newcastle University.

My work is very varied. I do some teaching, but I'm primarily researching at the moment, and when the Faithful Judgements project was running, a day might involve interviewing people in their own homes, or running a dialogue group in somewhere like a cathedral, or someone's home. Now, I'm analysing data and writing the final report. Some of that is with other members of the research team, and sometimes, yes, just hunched over my computer.

Faithful Judgements is a project looking at whether being a person of faith influences the judgements people make about the ethics of new reproductive and genetic technologies, and the way they make them. In that project, we also explored the personal experiences of Christians and Muslims who had been faced with fertility treatment or genetic testing.

This particular study has its roots in some work I did a few years ago with colleagues at Newcastle and Durham Universities, looking at people's views on prenatal sex- selection. We noticed that participants with a religious identity sometimes had distinctive viewpoints on bioethical issues, but they were inhibited about speaking about them in public. I wanted to follow that up.

What people are finding in the clinic is that doctors and other health-care professionals steer away from raising questions about faith because of the sensitivities involved (Features, 2 May). If patients raise it themselves, staff find that they can't answer the questions - which you wouldn't expect, anyway, because they aren't religious experts - and they can't point people to where they should go. It's not hostility so much as a lack of space for the questions in these settings, and no mechanism for raising the questions as something patients want to discuss.

Faith-group leaders and chaplains, who are, in a sense, the intermediaries, are sometimes very inexperienced in handling the pastoral issues. They may never have had to listen to someone's dilemmas about genetic testing or infertility. Or they may have met someone having IVF treatment, but the more recent developments, such as egg donation, they won't have encountered yet.

It's unfamiliar territory for ministers, and may be unfamiliar for the faith group itself. Some ministers said that, if they asked for guidance themselves, nobody could tell them. It's all so new. A frequent comment was: "Our faith group needs to get its act together." The biomedical field moves so quickly that often the Church doesn't yet have a fully worked-out position, and clergy feel ill-equipped to help. That can mean that people feel effectively abandoned as they make their own difficult decisions.

People want to be accompanied on their journey rather than to be told what the destination should be. Nowadays, the internet is often where people go next for information and contacts rather than to others in their own community. And prayer is important to them, both in discernment, and for support in living with the decision they come to.

I come from a very mixed faith background, and had a religious upbringing that was very catholic. Through my teens I was drawn to the Religious Society of Friends (the Quakers), and I've been a member now for 28 years. Two of the core values, or testimonies, of Quakers are truth and equality. I think the testimony to truth drives research, wanting to find out something of the truth about things. The testimony to equality underpins a commitment to working with lay people who are often left out of philosophical debates and policy deliberations.

The funding for the project ended in January; so we're now focusing on disseminating the findings. The first report should be available on our website later this year, and there'll be the usual academic papers after that. Our findings suggest that many people who are faced with difficult choices about fertility treatment or genetic testing feel unsupported by their faith community, and unsure of where to go for spiritual advice.

We feel it's vital to ensure that the results reach the people who can use them, to help improve the support they give, particularly health-care chaplains, faith-group leaders, and clinicians. Better understanding about how people of faith approach these issues will also help with more effective and inclusive public engagement and consultation processes.

When making an ethical decision myself, I generally start by finding out the facts of the matter as far as I can; so I probably behave like a typical academic in my personal decision-making. But I also pay attention to intuition and gut feelings, not holding that they are always right, but believing that they can be pointing towards something I'm aware of at some level but I'm overlooking. When it's a personal ethical matter, I think I'm very Quaker in laying special emphasis on practices of discernment. Sometimes that will mean the collective discernment of other Friends.

The most important decision I made was probably to leave bench science and move into bioethics. But in reality I don't think you can see the real consequences of a choice until the end of the story. Apparently insignificant things can end up having massive effects a long way down the line - and sometimes in ways you couldn't anticipate at all.

I'm an orphan with no siblings; so having been taken up by my partner's family is very nice.

As a child, I read a lot of science fiction, particularly written by women like Andre Norton, Zenna Henderson, and Ursula Le Guin. It's only with time that I realise how much their values - being open to difference and alienness, being curious, exploring, staying human however sophisticated the technology - shaped mine. The spaceships were cool, too.

I like to take holidays somewhere with mountains, water, and history, and preferably warm.

My biggest regret is that my current lifestyle means I can't have a dog.

I've been profoundly deaf since childhood; so I only hear things within a select range of frequencies. My favourite sounds include trains going past the bedroom window in the night, and the flying fox fly-past at dusk in Centennial Park, Sydney. My partner's voice when she comes home.

Because I've been deaf for so long, it's what's normal for me. I lip-read pretty well, and have the benefit of a very powerful hearing aid in the one ear that works. In large groups of people, it's more difficult. I'm actually married to a classical musician; so I'm exposed to a wide repertoire of music that I enjoy.

Pretty much everything the current contemptible government has said and done are the things that make me angry.

I'm happiest when everyone I love is well and happy.

I'd welcome the opportunity to help Theresa May experience what it's like to seek sanctuary in a foreign land and find yourself locked up instead; so I'd choose to be locked in a church for a few hours with her.

Professor Leach Scully was talking to Terence Handley MacMath.

The final report on the project, Faithful Judgements: The role of religion in laypeople's ethical evaluations of new reproductive and genetic technologies, will be available later this year. jackie.scully@newcastle.ac.uk

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