Vancouver

Sharing doesn't always come easily. But it may be necessary to generate research that relies on obtaining genetic samples from people from a variety of geographic locations and ethnic backgrounds.

The Human Genome Organisation (HUGO), at its annual meeting in Vancouver earlier this month, released guidelines encouraging pharmaceutical companies and others to donate 1–3 per cent of their annual net profit to health infrastructure and humanitarian aid. If widely adopted, these guidelines could encourage more countries to participate in efforts such as the Human Genome Diversity Project (see above).

But adoption is unlikely to come easily, admits Bartha Knoppers, chairperson of HUGO's ethics committee, which wrote the guidelines. “At the beginning, it may sound utopian or naive, but if you don't bring it up, the issues don't advance,” says Knoppers, a law professor at the University of Montreal.

Many subtleties complicate the matter. For instance, HUGO's guidelines emphasize helping an entire country or community, whereas HGDP's guidelines specifically favour rewarding those who cooperate.

In some cases, this is straightforward. For example, people with Tangiers disease — a rare genetic condition resulting in lower levels of HDLC, or ‘good’ cholesterol — could be easily rewarded for their involvement if a drug is developed, says Kare Berg, a geneticist at the University of Oslo.

But tracking down everyone who has ever participated in a cancer trial that may have contributed to a successful therapy years after their participation is more complicated, says Dorothy Wertz, a sociologist at the Eunice Kennedy Shriver Center in Waltham, Massachusetts.