Navigating Data Sharing in Research

We will discuss benefits and emerging challenges in sharing biomedical research data. We will draw on experiences from the Electronic Medical Records and Genomics (eMERGE-IV) Network and consider the ethical, legal and social issues that arise. 

Overview of Presentation:

• Sharing of biomedical research data offers significant benefits for scientific discovery but must be balanced against potential harms. 

• The challenges may be pronounced in large consortiums, where there are different laws and regulations. We will draw on the experience of eEMRGE-IV Network, a US-based, multi-site consortium, to explore challenges that arise 

• We will consider the ethical, legal and social implications of sharing biomedical research data, including concerns about individual and group harms, and propose steps to reduce the risks.