The World Medical Association is to draw up international guidelines on the use of centralised health databases. The decision was taken in Geneva last week at a joint seminar with the World Health Organization on the ethical implications and optimal design of centralised health databases.
Recent advances in genetics and the formation last year of the Icelandic genetic database have sharpened focus on the potential for abuse of all health databases (BMJ 1999;318:11), although centralised health databases have been an essential resource for scientific research for many years.
“The public is rightly concerned about whether their right to privacy and confidentiality is threatened by these databases and whether information about them as individuals could be disclosed and misused,” said Dr Anders Milton, chairman of the World Medical Association. “Guidelines must address the issues of informed consent, privacy, confidentiality, individual access, and accountability on the part of the owner of the database.”
Delegates expressed concern about the difficulty of distinguishing genetic data from other health data, and one of the key questions that still need to be answered is whether separate guidelines are needed. The role of the private sector also needs to be clarified. A working party of the World Medical Association will present draft guidelines to the World Medical Association's annual general meeting at Edinburgh in October.
Speaking at the seminar, Dr Daniel Wikler, senior ethicist at the World Health Organization, cautioned that developing countries must receive particular attention because they are targets for research initiatives even though the level of public awareness and education may be low.
“Our consideration of ethical and social issues raised by centralised databases is a balancing effort,” he added. “In the long run, the question of which individuals or companies reaped the greatest short term profit or benefit loses significance if the fruits of research, which might have been impossible to achieve in any other way, enter into the mainstream of medicine and public health.”
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AP
Dr Kari Stefansson of Iceland”s deCODE Genetics, whose company has been allowed to create a huge database of DNA profiles