The Canadian government and Genome Canada announced a $3.3 million investment in Can-SHARE, a program to lower global legal barriers to the sharing of genomic data. The program will support efforts by the Global Alliance for Genomics and Health to harmonize international genome polices on patient consent, privacy and security, accountability and ethics review.

"Everything is still done in silos within national jurisdictions under national laws," Bartha Maria Knoppers, chair of the Public Population Project in Genomics and Society, told BioWorld Today. "But diseases know no borders. For various diseases, we need to have information from around the world."

One of the most sensitive areas for countries is to ensure patient consent is obtained prior to the sharing of individual genomic data. That is especially so for "legacy consent," i.e. permission given by patients more than five years ago for the release of very limited amounts of their genomic data. A case in point: ovarian cancer genomic data.

"We know that breast and ovarian cancer go together," Knoppers said. "So what happens when you want access to breast cancer genomic data? We still have to decide what kind of mechanisms we can put in place to allow for the use of that very valuable data."

Because of the benefits to babies born with undiagnosable conditions, Knoppers and her colleagues have begun to focus on the sharing of pediatric genomic data. Genomic data placed into a newborn's health record "could tell families what their babies have right now, or tell them what they might have in the future," said Knoppers.

That is of enormous interest to Jan Friedman, who heads a research group at the University of British Columbia focused on genetic causes of intellectual disability among newborns. In one instance, understanding changes in the human genome, he told BioWorld Today, helped a newborn overcome intractable epileptic seizures.

"We found para-mutations that are known to cause a particular kind of disorder that are responsive to very high doses of a vitamin. So we put the child on this vitamin and it essentially stopped the seizure after all the medicines we had tried hadn't worked."

That result might not have been possible without access to data on genomic para-mutations, Friedman pointed out. "Mutations like this one are rarely seen by doctors. We don't know it's disease-causing without being able to compare our genomic data with other doctors who have seen children with this kind of a problem."

Researchers and clinicians are repeatedly hamstrung by consent, security, privacy and ethics rules that vary provincially, nationally and internationally, Friedman added. Harmonized, interoperable global policies for the sharing of genomic data will make his job a lot easier. "If we all had the same rules, it would save a lot of time, a lot of effort and a lot of money."

Perhaps the stickiest policy area for cooperation on genomics among nations is ethics review equivalency. Here, different cultures often produce different views on what is ethical or not and for that reason make ethical decisions on shared genomics the hardest to balance or integrate. By contrast, mutual recognition of ethics processes among different countries (e.g. ethics committee composition, expertise, time tables, etc.) "saves you a lot of time," Knoppers said.

"If, as a researcher, you're dealing with 17 researchers before 17 different ethics committees in 17 different countries you can spend more time getting ethics approval than you can doing the science."

Knoppers said, eventually, genome labs that follow new global policies on genomic data-sharing will be officially recognized by organizations conducting genomic-related research. The Global Alliance for Genomics and Health itself, for example, is pooling data from around the world on BRCA (breast cancer) genetic variants. Increasingly, it will come to rely on international labs, which adhere to its policies on genomic data-sharing.

"It's almost like a best practices kind of authentication that we're trying to get to," Knoppers said." Labs and institutions which follow the policies on genomic data-sharing would be seen as particularly trustworthy."