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  • Title: Anticipating the ethical, legal, and social implications of human genome research: An ongoing experiment.
    Author: Juengst ET.
    Journal: Am J Med Genet A; 2021 Nov; 185(11):3369-3376. PubMed ID: 34155808.
    Abstract:
    Dr. Victor McKusick was a founding member of the joint NIH-DOE working group that designed the federal effort to address the ethical, legal, and social implications of the US Human Genome Project in 1989. A key feature of this effort was its commitment to anticipating genomics-driven questions before they became urgent practical dilemmas, by complementing the scientific effort to map and sequence the human genome with projects by a wide range of social scientists, humanities scholars, legal experts, and public educators designed to equip society with the foresight required to optimize the public welfare benefits of new genomic information. This article describes the origins of that experiment and the model of anticipatory science policy that it produced, as one piece of Dr. McKusick's extraordinary intellectual legacy.
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