Three decades of ethical, legal, and social implications research: Looking back to chart a path forward

More than thirty years ago in the United States, the National Center for Human Genome Research (NCHGR) at the National Institutes of Health (NIH) and its partner in the Human Genome Project (HGP), the Department of Energy (DOE), called for proposals from social scientists, ethicists, lawyers, and ot...

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Bibliographic Details
Published in:Cell genomics 2022-07, Vol.2 (7), p.100150, Article 100150
Main Authors: Dolan, Deanne Dunbar, Lee, Sandra Soo-Jin, Cho, Mildred K.
Format: Article
Language:English
Subjects:
bioethics
ELSI research
genetics
genomics
life sciences
public interest
research ethics
science policy
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Summary:More than thirty years ago in the United States, the National Center for Human Genome Research (NCHGR) at the National Institutes of Health (NIH) and its partner in the Human Genome Project (HGP), the Department of Energy (DOE), called for proposals from social scientists, ethicists, lawyers, and others to explore the ethical, legal, and social implications (ELSI) of mapping and sequencing the human genome. Today, nearly twenty years after the completion of the HGP, the ELSI Research Program of the National Human Genome Research Institute (NHGRI) continues this support. It has fostered the growth of ELSI research into a global field of study, uniquely positioned at the nexus of many academic disciplines and in proximity to basic and applied scientific research. We examine the formation of the first ELSI program and consider whether science policy in the public interest can exist within the confines of a set-aside from the NHGRI budget. [Display omitted] Dolan, Lee, and Cho describe the development of the ELSI Research Program at the National Human Genome Research Institute of the National Institutes of Health. They consider the implications of the ELSI institutional arrangement for both the field of study and science policy in the public interest.
ISSN:2666-979X
2666-979X
DOI:10.1016/j.xgen.2022.100150