杏吧原创

SHOULD scientists who take blood and tissue samples for research be allowed
to use them for other studies without permission? Will the original donors care
if they do?

Getting the answer right is a big deal for geneticists who are beginning to
link diseases to genes in the newly sequenced human genome. Respecting the
wishes of blood and tissue donors is critical. Make a mess of it and we
jeopardise the hunt for the next generation of treatments.

One group of indigenous people in British Columbia is feeling particularly
let down. Members of the Nuu-chah-nulth claim research was done on their blood
without their consent. They are angry, and want their samples back
(see p 7).

In the 1980s Nuu-chah-nulth gave permission for a researcher from the
University of British Columbia to take blood samples for a study into the
genetics of an unusual form of arthritis. But they claim the same samples were
used again without their consent for a different study. The researcher, Ryk
Ward, now at the University of Oxford, says samples are often retained for
potential further research. But he promises to destroy blood serum for anyone
who withdraws their consent.

Researchers who routinely use genetic samples in their work, take note: the
Nuu-chah-nulth鈥檚 reaction could be a taste of things to come.

Why? Volunteers all over the world are being asked to donate DNA for
research. In some cases, the nature of the research is specified on consent
forms that volunteers sign. But in others it isn鈥檛. And on the whole,
researchers would prefer to avoid the hassle of tracing people every time they
want to use a blood sample.

In the US, guidelines drawn up by the government and the National Bioethics
Advisory Commission, declare that people donating DNA for research have to be
told what their sample will be used for. However, 鈥渟econdary use鈥� of genetic
material is treated mostly as a privacy issue. If individuals aren鈥檛 identified
by the new research, they don鈥檛 need to be consulted, or even informed.

It鈥檚 slightly different in Britain. The Medical Research Council and the
Wellcome Trust are drawing up plans to collect DNA from 500,000 people for a
study linking genes and lifestyle with disease. The researchers planning the
study say they will specify broad uses the DNA will be put to. But that with
consent the samples may be used for other disease associations which cannot be
anticipated now.

Some volunteers will be perfectly happy with either of these approaches.
They鈥檝e given their DNA for research and as far as they鈥檙e concerned, that鈥檚 all
they want to know. But others may be more troubled, particularly indigenous
people, with their long history of exploitation at the hands of Europeans.

Clearly people have the right to decide how their own genetic material will
be used and it doesn鈥檛 have to be a bureaucratic nightmare. Volunteers could
simply tick a box on the consent form if they want to know what their DNA is
intended for. Or they could be asked to specify areas of research they don鈥檛
want to be part of, such as studies on alcoholism, race, or intelligence.

If they object, they must have the right to withdraw.