cho and sanker - C O M M E N TA RY 2004 Nature Publishing...

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Forensic genetics and ethical, legal and social implications beyond the clinic Mildred K Cho 1 & Pamela Sankar 2 Data on human genetic variation help scientists to understand human origins, susceptibility to illness and genetic causes of disease. Destructive episodes in the history of genetic research make it crucial to consider the ethical and social implications of research in genomics, especially human genetic variation. The analysis of ethical, legal and social implications should be integrated into genetic research, with the participation of scientists who can anticipate and monitor the full range of possible applications of the research from the earliest stages. The design and implementation of research directs the ways in which its results can be used, and data and technology, rather than ethical considerations or social needs, drive the use of science in unintended ways. Here we examine forensic genetics and argue that all geneticists should anticipate the ethical and social issues associated with nonmedical applications of genetic variation research. C O M M E N TA RY S8 VOLUME 36 | NUMBER 11 | NOVEMBER 2004 NATURE GENETICS SUPPLEMENT Integrating ethical and social issues Data on human genetic variation are being generated and used to better understand human origins, susceptibility to illness and genetic causes of disease. The US National Human Genome Research Institute (NHGRI) recently proposed the next stage in this work to carry forward and expand these goals and to reaffirm a commitment, present since the start of the Human Genome Project, that appropriate uses of this infor- mation will be based on ethical, legal and social science analysis 1 . The history of destructive episodes in genetic research makes this attention to the ethical and social implications of genomics research essential 2 . This is especially true of human genetic variation research, because it provides the opportunity to find the genetic basis of individual and group differences. The consideration of ethical, legal and social implications (ELSI) of genetic research will not be maximally effective if it separates the creation of knowledge from its uses or if it sees the solution to appropriate uses of sci- ence as coming from a “cohort of scholars in ethics, law, social science, clinical research, theology, and public policy” 1 rather than emerging with and from the science. Thus, ELSI analysis should be integrated into sci- ence, with participation of scientists; should be conducted proactively, rather than after scientific research projects are conducted; and should anticipate and monitor applica- tions of research. A collaborative effort that centrally involves scientists and dialog among many scientific communities is neces- sary to shape science for responsible uses, because the way in which science is designed and carried out fundamentally affects how it can be used. Too often, the mere availability of data and technology, rather than ethical considerations or social needs, drives its use
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