Literature DB >> 11808677

Ignorance, information and autonomy.

J Harris1, K Keywood.   

Abstract

People have a powerful interest in genetic privacy and its associated claim to ignorance, and some equally powerful desires to be shielded from disturbing information are often voiced. We argue, however, that there is no such thing as a right to remain in ignorance, where a fight is understood as an entitlement that trumps competing claims. This does not of course mean that information must always be forced upon unwilling recipients, only that there is no prima facie entitlement to be protected from true or honest information about oneself. Any claims to be shielded from information about the self must compete on equal terms with claims based in the rights and interests of others. In balancing the weight and importance of rival considerations about giving or withholding information, if rights claims have any place, rights are more likely to be defensible on the side of honest communication of information rather than in defence of ignorance. The right to free speech and the right to decline to accept responsibility to take decisions for others imposed by those others seem to us more plausible candidates for fully fledged rights in this field than any purported right to ignorance. Finally, and most importantly, if the right to autonomy is invoked, a proper understanding of the distinction between claims to liberty and claims to autonomy show that the principle of autonomy, as it is understood in contemporary social ethics and English law, supports the giving rather than the withholding of information in most circumstances.

Entities:  

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

Mesh:

Year:  2001        PMID: 11808677     DOI: 10.1023/a:1013058801622

Source DB:  PubMed          Journal:  Theor Med Bioeth        ISSN: 1386-7415


  6 in total

1.  Comment on a view favoring ignorance of genetic information: confidentiality, autonomy, beneficence and the right not to know.

Authors:  M C Bottis
Journal:  Eur J Health Law       Date:  2000-06

2.  Protecting and promoting privacy in an uncertain world: further defences of ignorance and the right not to know.

Authors:  G T Laurie
Journal:  Eur J Health Law       Date:  2000-06

3.  In defence of ignorance: genetic information and the right not to know.

Authors:  Graeme T Laurie
Journal:  Eur J Health Law       Date:  1999-06

4.  Public health and private lives.

Authors:  Margaret Brazier; John Harris
Journal:  Med Law Rev       Date:  1996       Impact factor: 1.267

5.  Genetic diagnostic information and the duty of confidentiality: ethics and law.

Authors:  Charles Ngwena; Ruth Chadwick
Journal:  Med Law Int       Date:  1993

6.  Who should know about our genetic makeup and why?

Authors:  T Takala; H A Gylling
Journal:  J Med Ethics       Date:  2000-06       Impact factor: 2.903

  6 in total
  25 in total

1.  Giving and withholding of information following genomic screening: challenges identified in a study of primary care physicians in Estonia.

Authors:  Liis Leitsalu; Laura Hercher; Andres Metspalu
Journal:  J Genet Couns       Date:  2011-12-08       Impact factor: 2.537

2.  Can Broad Consent be Informed Consent?

Authors:  Mark Sheehan
Journal:  Public Health Ethics       Date:  2011-08-03       Impact factor: 1.940

Review 3.  Concepts of "person" and "liberty," and their implications to our fading notions of autonomy.

Authors:  Tuija Takala
Journal:  J Med Ethics       Date:  2007-04       Impact factor: 2.903

4.  Decision-making about inherited cancer risk: exploring dimensions of genetic responsibility.

Authors:  Holly Etchegary; Fiona Miller; Sonya deLaat; Brenda Wilson; June Carroll; Mario Cappelli
Journal:  J Genet Couns       Date:  2009-03-18       Impact factor: 2.537

5.  Communicating genetic information in the family: enriching the debate through the notion of integrity.

Authors:  Paula Boddington; Maggie Gregory
Journal:  Med Health Care Philos       Date:  2008-04-09

6.  Consent to epistemic interventions: a contribution to the debate on the right (not) to know.

Authors:  Niels Nijsingh
Journal:  Med Health Care Philos       Date:  2016-03

7.  Is there a duty to remain in ignorance?

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

8.  Looking for Trouble: Preventive Genomic Sequencing in the General Population and the Role of Patient Choice.

Authors:  Gabriel Lázaro-Muñoz; John M Conley; Arlene M Davis; Marcia Van Riper; Rebecca L Walker; Eric T Juengst
Journal:  Am J Bioeth       Date:  2015       Impact factor: 11.229

9.  Scrutinizing the Right Not to Know.

Authors:  Benjamin E Berkman; Sara Chandros Hull; Leslie G Biesecker
Journal:  Am J Bioeth       Date:  2015       Impact factor: 11.229

10.  Pregnancy in Advanced Kidney Disease: Clinical Practice Considerations on a Challenging Combination.

Authors:  Rozemarijn Snoek; Rieke van der Graaf; Jildau R Meinderts; Franka van Reekum; Kitty W M Bloemenkamp; Nine V A M Knoers; Albertien M van Eerde; A Titia Lely
Journal:  Nephron       Date:  2020-02-24       Impact factor: 2.847

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