May 14, 2014
An article published in Human Genetics makes a case for positioning genomic and clinical data sharing within a human rights framework. The authors believe that while collaboration for data sharing is increasingly embraced by policymakers and the international biomedical community, there is a lack of common ethical and legal framework to connect regulators, funders, consortia, and research projects. The authors recommend an international code of conduct nestled within the human rights framework to provide accountability in the age of global genomic and clinical data sharing.
The authors have identified key obstacles that can be detrimental to data sharing in the current times which include lack of policy harmonization, lack of structural support, legal and ethical hurdles and cultural and behavioral differences. The authors believe that these obstacles can be overcome by a human rights approach as it has both political and legal dimensions, reaching beyond the moral appeals of bioethics and can provide a more robust governance framework for the regulation of genomics research. Another benefit is that human rights belong to individuals and groups, and can distinguish between data sharing and privacy concerns. Additionally it can foster responsible translational genomic research by offering stronger protection in three critical areas: privacy; anti-discrimination and fair access; and procedural fairness.
The authors believe that even though there may be concerns and objections to a human rights framework, the benefits far outweigh the concerns. Finally, the authors themselves intend to engage stakeholders in co-designing this code and encourage questions as well as concerns to be sent to them to work on this “important policy making project”. Contact firstname.lastname@example.org, or email@example.com