杏吧原创

JUST THINK. Without real lives, all that hard work sequencing the human
genome will be worthless. In order to tease out the roots of
disease鈥攇enetic and environmental鈥攔esearchers will need not only
people鈥檚 DNA but also their medical records, details of their lifestyles and,
preferably, family histories. And with the imminent arrival of the first
sequenced human genome, there鈥檚 a race on to create large databases to hold all
that information.

This week, Britain鈥檚 Medical Research Council (MRC) outlined just such a
database, starting with 500 000 volunteers. At the same time, a British company
called Gemini Holdings announced plans for another database covering the
Canadian province of Newfoundland and Labrador.

Iceland is already some way down the road to a national database, but is now
running into problems. It should be possible to learn from its troubles.

Just over a year ago, as the parliament in Reykjavik discussed the database,
New 杏吧原创 argued for a cautious approach. Unfortunately, the worst
has happened. The Icelandic government has not taken all its people with it.
Doctors feel the database threatens their relationships with patients and are
threatening to sabotage it by withholding medical records
(鈥淐uts no ice鈥�, New 杏吧原创, 12 February, p 5).

Let鈥檚 be clear: these databases are essential. They promise to reveal
鈥渉armful鈥� genes and, in some cases, ways for carriers to stave off the worst
effects of those genes. They will also help companies to develop drugs more
efficiently. So, it is crucial that people feel at ease with the implications of
researchers rifling through their DNA.

One issue still to be resolved is consent. Iceland鈥檚 270 000 citizens are
automatically included in the project. If they do not want to be involved, they
have to opt out. This seems harsh. Certain genes will have serious powers of
prediction鈥攐f early-onset Alzheimer鈥檚, for example鈥攚hich have big
implications for individuals and their families. People need to understand that
as well as benefits, the new databases will also bring bad news鈥攖hen they
should be asked if they want to take part.

Allied to consent is the question of who decides what research may be done
with a database. Medical research is one thing, but there are scientists eager
to study the genetic roots of intelligence, criminality and even race. Should
donors have the freedom to withdraw their DNA from such potentially divisive
projects?

Privacy is another problem. The databases cannot be made fully anonymous. As
people fall ill and die, the details will need to be added. So, safeguards must
be included to prevent people being identified on the database. This has been
another bone of contention in Iceland.

Then there is the question of who benefits. The databases are potential gold
mines for drugs companies. But they should not be the only ones to profit.

Iceland has transferred ownership of its database to deCODE genetics, a
private company in Reykjavik鈥攁 move that is being challenged by a group of
doctors as unconstitutional. deCODE has already signed a $200 million
deal with Swiss pharmaceuticals company Hoffmann-La Roche to let it use the
database.

In return for the nation鈥檚 DNA, deCODE will supply Iceland with any drugs
developed from the database free of charge. In a similar deal, Gemini has agreed
to pay royalties on any commercial developments from its database to a
foundation for the benefit of the people of Newfoundland and Labrador. Are these
reasonable returns for the wealth the databases will generate?

Britain鈥檚 database will initially be operated by the MRC and the Wellcome
Trust, two organisations that plough profits back into biomedical research. What
happens, though, if they decide to sell off this lucrative product?

The MRC has this week appointed a company to measure the public鈥檚 response to
its plans. This is a good start, but it does not go far enough. Somebody needs
to look hard at the roles of the MRC and Wellcome Trust in this project. What
responsibilities will they have to the public?

These issues deserve a full and wide public debate, mediated by an
independent body, such as the Nuffield Council for Bioethics or the government鈥檚
Human Genetics Advisory Commission. The government of Newfoundland and Labrador,
which is only now formulating a policy on genetic testing, should also make sure
that a debate takes place on Gemini鈥檚 plans.

These databases are likely to have a profound impact on the nation鈥檚 health.
They are too important to get wrong.