Scientific rationality, uncertainty and the governance of human genetics: an interview study with researchers at deCODE genetics

European Journal of Human Genetics : EJHG
Stefán Hjörleifsson, Edvin Schei

Abstract

Technology development in human genetics is fraught with uncertainty, controversy and unresolved moral issues, and industry scientists are sometimes accused of neglecting the implications of their work. The present study was carried out to elicit industry scientists' reflections on the relationship between commercial, scientific and ethical dimensions of present day genetics and the resources needed for robust governance of new technologies. Interviewing scientists of the company deCODE genetics in Iceland, we found that in spite of optimism, the informants revealed ambiguity and uncertainty concerning the use of human genetic technologies for the prevention of common diseases. They concurred that uncritical marketing of scientific success might cause exaggerated public expectations of health benefits from genetics, with the risk of backfiring and causing resistance to genetics in the population. On the other hand, the scientists did not address dilemmas arising from the commercial nature of their own employer. Although the scientists tended to describe public fear as irrational, they identified issues where scepticism might be well founded and explored examples where they, despite expert knowledge, held ambiguous or tentative ...Continue Reading

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Citations

Mar 10, 2015·Journal of Empirical Research on Human Research Ethics : JERHRE·Jane MillerAnne Cambon-Thomsen
Jan 7, 2021·Public Understanding of Science·Gwendolyn Blue, Debra Davidson
Jul 3, 2021·Nature Reviews. Genetics·Joel Gelernter, Renato Polimanti

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