Literature DB >> 23796275

Bioethics methods in the ethical, legal, and social implications of the human genome project literature.

Rebecca L Walker, Clair Morrissey.   

Abstract

While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications (ELSI) of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross-disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis of a sample of ELSI publications appearing between 2003 and 2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. We found that the aims of ethics within ELSI are largely prescriptive and address multiple groups. We also found that the bioethics methods used in the ELSI literature are both diverse between publications and multiple within publications, but are usually not themselves discussed or employed as suggested by bioethics method proponents. Ethics in ELSI is also sometimes undistinguished from related inquiries (such as social, legal, or political investigations).
© 2013 John Wiley & Sons Ltd.

Entities:  

Keywords:  ELSI; bioethics methods; ethics; human genome

Mesh:

Year:  2013        PMID: 23796275      PMCID: PMC3785570          DOI: 10.1111/bioe.12023

Source DB:  PubMed          Journal:  Bioethics        ISSN: 0269-9702            Impact factor:   1.898


  38 in total

Review 1.  A method in search of a purpose: the internal morality of medicine.

Authors:  J D Arras
Journal:  J Med Philos       Date:  2001-12

Review 2.  The impossibility of a morality internal to medicine.

Authors:  R M Veatch
Journal:  J Med Philos       Date:  2001-12

Review 3.  Finding a forum for bioethics in U.S. public policy.

Authors:  Kathi E Hanna; Robert M Cook-Deegan; Robyn Y Nishimi
Journal:  Politics Life Sci       Date:  1993-08

Review 4.  Ethical, legal, and social implications of genomic medicine.

Authors:  Ellen Wright Clayton
Journal:  N Engl J Med       Date:  2003-08-07       Impact factor: 91.245

5.  Meanings, policies, and medicine: on the bioethical enterprise and history.

Authors:  C E Rosenberg
Journal:  Daedalus       Date:  1999

Review 6.  Getting down to cases: the revival of casuistry in bioethics.

Authors:  J D Arras
Journal:  J Med Philos       Date:  1991-02

7.  Is it time for bioethics to go empirical?

Authors:  Chris Herrera
Journal:  Bioethics       Date:  2008-03       Impact factor: 1.898

8.  Questioning the Need for Informed Consent: A Case Study of California's Experience with a Pilot Newborn Screening Research Project.

Authors:  Lisa Feuchtbaum; George Cunningham; Stan Sciortino
Journal:  J Empir Res Hum Res Ethics       Date:  2007-09       Impact factor: 1.742

9.  The role of empirical research in bioethics.

Authors:  Alexander A Kon
Journal:  Am J Bioeth       Date:  2009       Impact factor: 11.229

10.  Hereditary nonpolyposis colorectal cancer family members' perceptions about the duty to inform and health professionals' role in disseminating genetic information.

Authors:  Rebecca D Pentz; Susan K Peterson; Beatty Watts; Sally W Vernon; Patrick M Lynch; Laura M Koehly; Ellen R Gritz
Journal:  Genet Test       Date:  2005
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  4 in total

1.  Articulating 'free, prior and informed consent' (FPIC) for engineered gene drives.

Authors:  Dalton R George; Todd Kuiken; Jason A Delborne
Journal:  Proc Biol Sci       Date:  2019-12-18       Impact factor: 5.349

2.  Attitudes toward the right to autonomous decision-making in psychiatric genetic testing: Controversial and context-dependent.

Authors:  Jana Strohmaier; Stephanie H Witt; Josef Frank; Noemi Lemme; Laura Flatau; Fabian Streit; Jerome C Foo; Markus Reitt; Dan Rujescu; Thomas G Schulze; Dirk Lanzerath; Franciska Illes; Franziska Degenhardt; Marcella Rietschel
Journal:  Am J Med Genet B Neuropsychiatr Genet       Date:  2019-03-26       Impact factor: 3.568

3.  Commentary: Grand challenge: ELSI in a changing global environment.

Authors:  Ignacio Macpherson; Ignacio Segarra
Journal:  Front Genet       Date:  2017-09-26       Impact factor: 4.599

4.  One small edit for humans, one giant edit for humankind? Points and questions to consider for a responsible way forward for gene editing in humans.

Authors:  Heidi C Howard; Carla G van El; Francesca Forzano; Dragica Radojkovic; Emmanuelle Rial-Sebbag; Guido de Wert; Pascal Borry; Martina C Cornel
Journal:  Eur J Hum Genet       Date:  2017-11-30       Impact factor: 4.246

  4 in total

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