Literature DB >> 36090688

"If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.

Deborah R Gordon1, Barbara A Koenig1,2.   

Abstract

Biological kin share up to half of their genetic material, including predisposition to disease. Thus, variants of clinical significance identified in each individual's genome can implicate an exponential number of relatives at potential risk. This has renewed the dilemma over family access to research participant's genetic results, since prevailing U.S. practices treat these as private, controlled by the individual. These individual-based ethics contrast with the family-based ethics- in which genetic information, privacy, and autonomy are considered to be familial- endorsed in UK genomic medicine and by participants in a multi-method study of U.S. research participants presented here. The dilemma reflects a conflict between U.S. legal and ethical frameworks that privilege "the individual" and exclude "the family" versus actual human genetics that are simultaneously individual and familial. Can human genetics succeed in challenging bioethics' hegemonic individualism to recognize and place the family at the center of the room where bioethics happens?

Entities:  

Keywords:  confidentiality and consent; ethics of disclosure; family; genetic information; relational autonomy

Year:  2021        PMID: 36090688      PMCID: PMC9454889          DOI: 10.1080/14636778.2021.2007065

Source DB:  PubMed          Journal:  New Genet Soc        ISSN: 1463-6778


  57 in total

1.  Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information.

Authors:  N Hallowell; C Foster; R Eeles; A Ardern-Jones; V Murday; M Watson
Journal:  J Med Ethics       Date:  2003-04       Impact factor: 2.903

2.  Anticipate and communicate: Ethical management of incidental and secondary findings in the clinical, research, and direct-to-consumer contexts (December 2013 report of the Presidential Commission for the Study of Bioethical Issues).

Authors:  Christine Weiner
Journal:  Am J Epidemiol       Date:  2014-08-22       Impact factor: 4.897

3.  Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.

Authors:  Laura M Beskow; P Pearl O'Rourke
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

4.  International Policies on Sharing Genomic Research Results with Relatives: Approaches to Balancing Privacy with Access.

Authors:  Rebecca Branum; Susan M Wolf
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

Review 5.  Disclosure practices and cultural narratives: understanding concealment and silence around cancer in Tuscany, Italy.

Authors:  D R Gordon; E Paci
Journal:  Soc Sci Med       Date:  1997-05       Impact factor: 4.634

6.  The return of results of deceased research participants.

Authors:  Anne Marie Tassé
Journal:  J Law Med Ethics       Date:  2011       Impact factor: 1.718

7.  Privacy and disclosure in medical genetics examined in an ethics of care.

Authors:  Dorothy C Wertz; John C Fletcher
Journal:  Bioethics       Date:  1991-07       Impact factor: 1.898

8.  Empty ethics: the problem with informed consent.

Authors:  Oonagh Corrigan
Journal:  Sociol Health Illn       Date:  2003-11

9.  Using a genetic test result in the care of family members: how does the duty of confidentiality apply?

Authors:  Michael Parker; Anneke Lucassen
Journal:  Eur J Hum Genet       Date:  2018-04-27       Impact factor: 4.246

10.  Communication of genetic test results to family and health-care providers following disclosure of research results.

Authors:  Kristi D Graves; Pamela S Sinicrope; Mary Jane Esplen; Susan K Peterson; Christi A Patten; Jan Lowery; Frank A Sinicrope; Sandra K Nigon; Joyce Borgen; Sherri Sheinfeld Gorin; Louise A Keogh; Noralane M Lindor
Journal:  Genet Med       Date:  2013-10-03       Impact factor: 8.822

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