Literature DB >> 17184418

The power of ethics: a case study from Sweden on the social life of moral concerns in policy processes.

Klaus Hoeyer1.   

Abstract

In this paper I report on an ethnographic study of an ethics policy developed by a start-up genomics company at the time it gained all commercial rights to a population-based biobank in the town of Umeå in northern Sweden. Tracing the interdependencies between power and morality, my research compares moral reflections and stances among 1) policymakers, 2) health professionals and 3) donors, in relation to the issues identified in the policy. These people seem to agree that trust and fairness are important issues and that 'something' needs protection in the face of commercial genetic research. However, their perceptions of trust, fairness and what it is that needs protection differ significantly. I conclude by considering the implications of variances in moral perspectives for the social study of ethics.

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Mesh:

Year:  2006        PMID: 17184418     DOI: 10.1111/j.1467-9566.2006.00542.x

Source DB:  PubMed          Journal:  Sociol Health Illn        ISSN: 0141-9889


  8 in total

1.  Biobank governance: heterogeneous modes of ordering and democratization.

Authors:  Herbert Gottweis; Georg Lauss
Journal:  J Community Genet       Date:  2011-12-07

2.  A trade secret model for genomic biobanking.

Authors:  John M Conley; Robert Mitchell; R Jean Cadigan; Arlene M Davis; Allison W Dobson; Ryan Q Gladden
Journal:  J Law Med Ethics       Date:  2012       Impact factor: 1.718

Review 3.  Ethical aspects of human biobanks: a systematic review.

Authors:  Danijela Budimir; Ozren Polasek; Ana Marusić; Ivana Kolcić; Tatijana Zemunik; Vesna Boraska; Ana Jeroncić; Mladen Boban; Harry Campbell; Igor Rudan
Journal:  Croat Med J       Date:  2011-06       Impact factor: 1.351

4.  Neglected ethical issues in biobank management: Results from a U.S. study.

Authors:  R Jean Cadigan; Dragana Lassiter; Kaaren Haldeman; Ian Conlon; Erik Reavely; Gail E Henderson
Journal:  Life Sci Soc Policy       Date:  2013-12-01

5.  Healthcare professionals' and patients' perspectives on consent to clinical genetic testing: moving towards a more relational approach.

Authors:  Gabrielle Natalie Samuel; Sandi Dheensa; Bobbie Farsides; Angela Fenwick; Anneke Lucassen
Journal:  BMC Med Ethics       Date:  2017-08-08       Impact factor: 2.652

6.  Towards 'Engagement 2.0': Insights from a study of dynamic consent with biobank participants.

Authors:  Harriet Ja Teare; Michael Morrison; Edgar A Whitley; Jane Kaye
Journal:  Digit Health       Date:  2015-09-28

7.  Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research.

Authors:  Melanie Goisauf; Gillian Martin; Heidi Beate Bentzen; Isabelle Budin-Ljøsne; Lars Ursin; Anna Durnová; Liis Leitsalu; Katharine Smith; Sara Casati; Marialuisa Lavitrano; Deborah Mascalzoni; Martin Boeckhout; Michaela Th Mayrhofer
Journal:  PLoS One       Date:  2019-09-18       Impact factor: 3.240

8.  Characterizing biobank organizations in the U.S.: results from a national survey.

Authors:  Gail E Henderson; R Jean Cadigan; Teresa P Edwards; Ian Conlon; Anders G Nelson; James P Evans; Arlene M Davis; Catherine Zimmer; Bryan J Weiner
Journal:  Genome Med       Date:  2013-01-25       Impact factor: 11.117

  8 in total

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