In a world where genome sequencing is becoming increasingly common, how do we weigh up the right to benefit from science with the standards of how personal data is shared and used?
Addressing the Sixth Plenary of the Global Alliance for Genomics and Health and over 420 delegates in Basel Switzerland, Caius Director of Studies in Law Dr Rumiana Yotova discussed this topic. She presented her research on the right to benefit from science and its implications for the sharing of genomic data.
The right was first set out in the 1948 Universal Declaration of Human Rights and later affirmed in the International Covenant on Economic, Social and Cultural Rights. Dr Yotova together with Professor Bartha Maria Knoppers from McGill University studied the practice of UN Member States in giving effect to the right domestically. They concluded that the right to benefit from science has important implications for responsible genomic data sharing, namely, it imposes an obligation on States to enable access to scientific knowledge and data freely and without discrimination. It also enacts states to protect the freedom of scientific research, as well as to ensure that the right to benefit from science is exercised in a manner respectful of human rights, including the right to privacy and to prior informed consent.
Following the meeting in Basel, the Global Alliance for Genomics and Health (GA4GH) - an international, non-profit alliance that accelerates the potential of research and medicine to advance human health - announced the release of three new interoperability standards. Part of a larger suit of standards, they ‘aim to create a federated network for responsible, international genomic data sharing’. Quoted on their website, Ewan Birney Chair of GA4GH and Director of the European Bioinformatics Institute (EMBL-EBI) said: ‘Together, these schemas and protocols overcome the most pressing technical challenges of sharing genomic and health related data that will help all of us in the genomics community as we work to advance precision medicine’.