Ethics, research needs must be balanced: Cotton

An Australian geneticist has called for better balancing of ethical concerns with researchers' needs when it comes to developing guidelines for the collection of human genetic and genomic information into databases for research purposes.

Prof Richard Cotton, director of the Genomic Disorders Research Centre at the Howard Florey Institute, and president of the Human Genome Variation Society (HGVS), said balanced guidelines would allow researchers to make the best use of the data without compromising the patients' rights to privacy.

This week, Cotton is speaking at an OECD workshop in Tokyo on issues of privacy and security for human genetic research databases. A report from the workshop will be distributed to government agencies interested in how privacy and security of databases is currently being assured, with recommendations for policy deliberations.

Cotton said it was important that strict guidelines be debated and global agreement on standards sought. "As more information is being collected on human genetics, it is important that we accurately record and monitor this information in an ethical manner that protects the patients, researchers and curators of databases," he said.

"Although the first world pays more attention to genetic health than developing nations, privacy and security issues surrounding genetic databases are a global responsibility."

Cotton said funding shortfalls, due to lack of interest from governments in funding databases, meant that much of the data collected in mutation databases was incomplete, often not up to date, and lacked preciseness.

Among the issues Cotton plans to raise at the workshop are database access criteria for public and private researchers, the control of data and research results, quality assurance, and validation and accreditation of research results.

"We're concerned, as we don't want to be constrained in taking people's mutations and putting them on the web for [other researchers] to use," he said. "You can't put personal details up on the web, so samples need to be non-traceable, non-identifiable. But you have to have all symptoms and possibly outcomes available, and ethnicity is also useful. It just needs to be anonymised with a code."

Cotton said standards protecting patient privacy had long been in place for printed publications, and he believed on-line publication should follow the same basic constraints. "[But] there is a whole lot of bureaucracy getting involved," he said.