Data sovereignty in genomics and medical research - Nature Machine Intelligence

Data, algorithms and compute (the main elements of AI) have advanced rapidly over the past two decades and are being deployed in people's lives in disruptive ways -- for good and ill -- without much regulation or, until recently, community deliberation. The fallout is considerable, and many concerns have been raised over harms of AI algorithms in society to individuals or groups. A recent example is a white paper by the American Civil Liberties Union (ACLU) entitled "AI in healthcare may worsen medical racism"4. The paper discusses several studies that inadvertently used biased data and machine learning models to make harmful medical decisions. In recent years, the machine learning community has called for participatory approaches whereby those whose life is impacted by algorithms have a major role in their development5.