An international code of conduct for genomics needs to be established, write researchers led by McGill University's Bartha Knoppers in a commentary at Nature.
The authors were all part of the International Cancer Genome Consortium, which just published a series of articles examining sequencing data encompassing thousands of tumors from about three dozen cancer types. That effort, which involved data sharing across countries' borders, lead to a number of lessons learned, Knoppers and her colleagues write.
"Genomics researchers worldwide are increasingly dealing with vast datasets gathered by consortia spanning many countries," they note. "Most are unclear on what to do to protect people's privacy and to comply with international and national data-protection laws, especially given recent and ongoing changes in legislation."
Going forward, Knoppers and her colleagues call on the genomics community to establish a code that describes how to meet current ethical and legal obligations. In particular, they say such a code it needs to consider identifiability and the protection of people's privacy; broad consent; return of results and in what form that retun occurs; how to withdraw people from studies who request it; and how to handle government requests for data. A first step, they add, would be to hold a meeting to go over topics like those that such a code should address.