This paper introduces a special issue of the American Journal of Bioethics focused on work presented at the 5th ELSI Congress: Innovating for a Just and Equitable Future. We call for ELSI scholars to tackle the difficult moral and empirical questions about what it means to represent the fullness of “the public”, how their engagement should be facilitated, and how we should interpret and apply their recommendations to maximally enhance equity and justice.
This paper reports our analysis of the ELSI Virtual Forum: 30 Years of the Genome: Integrating and Applying ELSI Research, an online meeting of scholars focused on the ethical, legal, and social implications (ELSI) of genetics and genomics. The proceedings and published literature demonstrate how justice in the implementation of genome science can be realized in two contexts: 1) by attending to equity in our decisions about how we allocate clinical and research resources, and 2) by attending to the equitable distribution of the benefits and risks of sharing genomic data. We conclude that members of the ELSI and genomics communities must work to ensure that human biases are not implemented along with genomic medicine.
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