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