RIPPLES from the tragic death last autumn of a young gene therapy patient,
Jesse Gelsinger, are still being felt across the US
(see p 5). First it emerged
that many gene therapy researchers had not been sending details of treatment
side effects to the US government鈥檚 Recombinant DNA Advisory Committee, the
public forum for gene therapy.
This may have been a bureaucratic glitch. But when Gelsinger鈥檚 father
announced that his son had not been told the full risks of his treatment, and
that the lead researcher in the case had a financial interest in the therapy,
the public cried foul. This lack of candour in a country where openness is
enshrined in law provoked a crisis of confidence in gene therapy.
In Britain, too, people have lost faith in science. This time, though, it鈥檚
the entire workings of the government鈥檚 scientific machinery that鈥檚 at fault. In
Science and Society, the House of Lords Select Committee on Science and
Technology highlights the growing mistrust between scientists and the public,
and blames a large part of it on government secrecy.
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Much of the problem can be traced to the poor handling by government
scientists and ministers of the BSE crisis. Growing unease about the speed of
advance, particularly in biotechnology, made things worse, say the Lords. It
reached boiling point last year in the public鈥檚 outright rejection of
genetically modified foods.
One response to these events would be to crank up the 鈥減ublic understanding
of science鈥�. This, the Lords point out, is a condescending approach which
implies that everything would be alright if only ordinary people were better
educated. While it has its place, they want something extra: for government and
scientists to learn from the public.
Science today is just as much a part of the political mainstream as is, say,
road building. And people question it, just as they do plans for a new road.
They aren鈥檛 necessarily interested in how science is done any more than they
want to know how to build a road. Yet they feel passionately about the health,
environmental and economic implications of roads and science.
Are they any good at judging these issues? 鈥淵es,鈥� say the Lords. Given the
full story, people use their common sense to make sophisticated judgements about
science.
This horse sense shines through in the submission to the Lords by Bob
Worcester, chairman of the market research company MORI. People want to know,
for example, 鈥渨hat鈥檚 in it for me?鈥� When asked in one survey to score
developments that were most beneficial to society, people gave organ transplants
and new drugs a high rating, while space research, genetic engineering of food
and cloning scored lowest. People just can鈥檛 see what these low scorers have to
offer, says Worcester.
Self-interest is not the only motivation, though. People cared more about
whether a scientific advance would help or harm others, offend morality or be in
the 鈥済eneral good鈥� than if it would personally benefit them.
Worcester also mentions a MORI survey for New 杏吧原创 on animal
testing which shows that the public is completely at home balancing benefits and
harms. For example, only 5 per cent of people approved of using monkeys in
potentially fatal experiments to test cosmetics. But when the experiments led to
a new drug for childhood leukaemia, 54 per cent approved
(see New 杏吧原创, 22 May 1999, p 26).
So how do people want the government to handle science? MORI found that more
than nine out of ten people wanted more openness in decision making. Eight out
of ten said they wanted information even if the government didn鈥檛 have the full
facts itself. They want the chance to make up their own mind. They also know who
they trust (see Diagram).
To restore public confidence, the select committee wants a complete shake-up.
At present, official information is treated as confidential until proved
otherwise. The Lords want this reversed. They recommend that government advisory
and decision-making bodies should meet in public and publish all scientific
information unless it is truly commercially sensitive.
This proposal will go down like a lead balloon in Whitehall where decisions
are made today. But we say three cheers for the Lords for deciding that it can
trust the public. Openness is the only way forward. As the US has found out
about gene therapy and Britain about the whole of science, anything less than
absolute frankness will lead to disaster.