title: Scientific rationality, uncertainty and the governance of human genetics: an interview study with researchers at deCODE genetics.
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 personal views on the use of predictive genetic technologies. The rationality of science was not seen as sufficient to ensure beneficial governance of new technologies. The reflexivity and suspension of judgement demonstrated in the interviews exemplify productive features of moral deliberation in complex situations. Scientists should take part in dialogues concerning the governance of genetic technologies, acknowledge any vested interests, and use their expertise to highlight, not conceal the technical and moral complexity involved.
authors.affiliation: Section for general practice, Department of Public Health and Primary Health Care, University of Bergen, Norway. stefan.hjorleifsson@isf.uib.no
authors.forename: Stefán
authors.initials: S
authors.lastname: Hjörleifsson
authors.forename: Edvin
authors.initials: E
authors.lastname: Schei
mesh_terms: D005239:Fear; D005260:Female; D036281:Genetic Research / Q000941:ethics; D005820:Genetic Testing / Q000941:ethics; D005826:Genetics, Medical / Q000191:economics / Q000941:ethics / Q000331:legislation & jurisprudence; D006801:Humans; D007055:Iceland; D007407:Interviews as Topic; D008297:Male; D008389:Marketing of Health Services; D035501:Uncertainty