Literature DB >> 10226920

Genetic privacy: orthodoxy or oxymoron?

A Sommerville1, V English.   

Abstract

In this paper we question whether the concept of "genetic privacy" is a contradiction in terms. And, if so, whether the implications of such a conclusion, inevitably impact on how society comes to perceive privacy and responsibility generally. Current law and ethical discourse place a high value on self-determination and the rights of individuals. In the medical sphere, the recognition of patient "rights" has resulted in health professionals being given clear duties of candour and frankness. Dilemmas arise, however, when patients decline to know relevant information or, knowing it, refuse to share it with others who may also need to know. This paper considers the notions of interconnectedness and responsibility to others which are brought to the fore in the genetic sphere and which challenge the primacy afforded to personal autonomy. It also explores the extent to which an individual's perceived moral obligations can or should be enforced.

Entities:  

Keywords:  Analytical Approach; Genetics and Reproduction; Professional Patient Relationship

Mesh:

Year:  1999        PMID: 10226920      PMCID: PMC479199          DOI: 10.1136/jme.25.2.144

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  4 in total

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Authors:  D Dickenson
Journal:  Acta Genet Med Gemellol (Roma)       Date:  1995

2.  Genetic links, family ties, and social bonds: rights and responsibilities in the face of genetic knowledge.

Authors:  R Rhodes
Journal:  J Med Philos       Date:  1998-02

3.  Few psychological consequences of presymptomatic testing for Huntington disease.

Authors:  S Bundey
Journal:  Lancet       Date:  1997-01-04       Impact factor: 79.321

4.  Patients' duties.

Authors:  M J Meyer
Journal:  J Med Philos       Date:  1992-10
  4 in total
  12 in total

Review 1.  Genetic information, rights, and autonomy.

Authors:  M Häyry; T Takala
Journal:  Theor Med Bioeth       Date:  2001-09

2.  Challenges of genetic testing in adolescents with cardiac arrhythmia syndromes.

Authors:  Lilian Liou Cohen; Marina Stolerman; Christine Walsh; David Wasserman; Siobhan M Dolan
Journal:  J Med Ethics       Date:  2011-09-27       Impact factor: 2.903

Review 3.  Genetic testing for hereditary cancer: challenges to ethical care in rural and remote communities.

Authors:  Lori D'Agincourt-Canning
Journal:  HEC Forum       Date:  2004-12

4.  Democracy and genetic privacy: the value of bodily integrity.

Authors:  Ludvig Beckman
Journal:  Med Health Care Philos       Date:  2005

5.  Is there a duty to remain in ignorance?

Authors:  Iain Brassington
Journal:  Theor Med Bioeth       Date:  2011-04

Review 6.  Ethical and methodological issues in pedigree stroke research.

Authors:  B B Worrall; D T Chen; J F Meschia
Journal:  Stroke       Date:  2001-06       Impact factor: 7.914

7.  The right not to know: an autonomy based approach.

Authors:  R Andorno
Journal:  J Med Ethics       Date:  2004-10       Impact factor: 2.903

8.  Living with hereditary non-polyposis colorectal cancer; experiences from and impact of genetic testing.

Authors:  C Carlsson; M Nilbert
Journal:  J Genet Couns       Date:  2007-08-18       Impact factor: 2.537

9.  Non-invasive prenatal testing for single gene disorders: exploring the ethics.

Authors:  Zuzana Deans; Melissa Hill; Lyn S Chitty; Celine Lewis
Journal:  Eur J Hum Genet       Date:  2012-11-28       Impact factor: 4.246

10.  The Ischemic Stroke Genetics Study (ISGS) Protocol.

Authors:  James F Meschia; Thomas G Brott; Robert D Brown; Richard J P Crook; Michael Frankel; John Hardy; José G Merino; Stephen S Rich; Scott Silliman; Bradford Burke Worrall
Journal:  BMC Neurol       Date:  2003-07-08       Impact factor: 2.474

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