Addressing Ethical Tensions in Genomic Data Policy: Case Studies and Learnings
This guidance document highlights six broad ethical tensions to be aware of when crafting sound, long-lasting genomic data policy. We do not imply that one ethical position is right or wrong, but that thorny ethical issues surround genomic data. As such, there is no overarching way to resolve the ethical tensions, nor are there concrete answers to questions that inevitably arise when crafting genomic data policy. Solutions will differ in different circumstances and cultural contexts. The document, therefore, seeks to provoke a thorough, diligent and nuanced exploration of critical ethical issues in the development of balanced policy, regulations, guidelines and practices.