Considered Choices? The New Genetics, Prenatal Testing and People with Learning Disabilities

By Linda Ward.

British Institute of Learning Disabilities

£16 (paperback) ISBN 1 902519 62 0

“I strongly favour controlling our children’s genetic destinies.
Working intelligently and wisely to see that good genes dominate as
many lives as possible is the truly moral way for us to
proceed.”

The view of James Watson, writing in the Independent in
April, has legitimacy. He discovered the DNA double helix, and is
the father of a disabled child. The voice of a world famous
geneticist is strong, but the voice of people with genetic
disabilities is often unheard.

This is not a shortcoming of Considered Choices. The
book presents the dilemmas of the new bioethics debate in a clear
and balanced way – starting with those rarely heard voices.

Considered Choices stemmed from discussions between
Linda Ward, the new director of the Norah Fry Research Centre, and
Marcia Rioux, president of Canada’s Roeher Institute, and a
subsequent conference in Bristol. The book starts with an excellent
overview from Tom Shakespeare, who says: “Understanding genetics
requires difficult balancing acts.” That difficulty is well managed
by all authors.

Jackie Rodgers and Joyce Howarth explain how they facilitated
the inclusion of the views of disabled people, through sensitive
but not over-protective workshops. And those views are presented in
a way that illuminates the following chapters.

Two parents, Sue and John Picton, are equally straightforward
about the questions that face them as a family. Oliver Russell
complements this from the perspective of a psychiatrist involved in
teaching medical students.

He makes clear that he is “not a philosopher, ethicist or
geneticist”, but demonstrates that anyone trying to engage medical
students in the bioethics debate must be all three.

The questions that research and public debate should address in
the future are proposed by Priscilla Alderson. Agnes Fletcher, who
is research assistant to the All Party Parliamentary Disablement
Group, contributes the view of a disabled writer and activist. And
Ruth Chadwick provides a more formal but no less comprehensible
understanding of how ethics relates to public policy.

Don’t be put off by the apparent complexity of this topic.
Considered Choices is very readable. So clear, that even
geneticists might understand it.

Chris Williams is lecturer in international education,
Institute of Education, University of London, and author of
Terminus Brain: The Environmental Threat to Human
Intelligence (Cassell).