Literature DB >> 26003543

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

Niels Nijsingh1.   

Abstract

The debate on the 'right (not) to know' has simmered on for over 30 years. New examples where a right to be informed is contrasted to a right to be kept in ignorance occasionally surface and spark disagreement on the extent to which patients and research subjects have a right to be self-determining concerning the health related information they receive. Up until now, however, this debate has been unsatisfactory with regard to the question what type of rights-if any-are in play here and to what extent they can provide a normative basis for informed consent. This paper provides an analysis of informed consent in the context of 'epistemic interventions': interventions which involve the communication of (health-related) information. First, I offer an analysis of the concept of a 'right not to know' in the context of consent to epistemic interventions. I argue that the scope of the consent is determined by the extent to which this intervention can be seen as an infringement of the private sphere. After that I show how this analysis affects the scope and standards of informed consent.

Entities:  

Keywords:  Epistemic interventions; Genetics; Genomics; Informed consent; Right (not) to know; Unsolicited information

Mesh:

Year:  2016        PMID: 26003543     DOI: 10.1007/s11019-015-9650-9

Source DB:  PubMed          Journal:  Med Health Care Philos        ISSN: 1386-7423


  25 in total

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

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

2.  Freedom and a right (not) to know.

Authors:  Juha Räikkä
Journal:  Bioethics       Date:  1998-01       Impact factor: 1.898

3.  Whole-Genome Sequencing in Diagnostic Medicine: Too Much Information for Doctors and Patients?

Authors:  Wolfram Henn
Journal:  Transfus Med Hemother       Date:  2009-07-21       Impact factor: 3.747

4.  To know or not to know? Genetic ignorance, autonomy and paternalism.

Authors:  Jane Wilson
Journal:  Bioethics       Date:  2005-10       Impact factor: 1.898

5.  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

6.  The right to genetic ignorance confirmed.

Authors:  Tuija Takala
Journal:  Bioethics       Date:  1999-07       Impact factor: 1.898

Review 7.  Managing incidental findings in human subjects research: analysis and recommendations.

Authors:  Susan M Wolf; Frances P Lawrenz; Charles A Nelson; Jeffrey P Kahn; Mildred K Cho; Ellen Wright Clayton; Joel G Fletcher; Michael K Georgieff; Dale Hammerschmidt; Kathy Hudson; Judy Illes; Vivek Kapur; Moira A Keane; Barbara A Koenig; Bonnie S Leroy; Elizabeth G McFarland; Jordan Paradise; Lisa S Parker; Sharon F Terry; Brian Van Ness; Benjamin S Wilfond
Journal:  J Law Med Ethics       Date:  2008       Impact factor: 1.718

8.  Incidental findings in genetics research using archived DNA.

Authors:  Ellen Wright Clayton
Journal:  J Law Med Ethics       Date:  2008       Impact factor: 1.718

9.  The 'right' not to know.

Authors:  D E Ost
Journal:  J Med Philos       Date:  1984-08

Review 10.  Ignorance, information and autonomy.

Authors:  J Harris; K Keywood
Journal:  Theor Med Bioeth       Date:  2001-09
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  3 in total

1.  Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing: a qualitative study.

Authors:  Marlies Saelaert; Heidi Mertes; Tania Moerenhout; Elfride De Baere; Ignaas Devisch
Journal:  BMC Med Ethics       Date:  2020-01-30       Impact factor: 2.652

2.  The right not to know and the obligation to know.

Authors:  Ben Davies
Journal:  J Med Ethics       Date:  2020-04-29       Impact factor: 5.926

3.  The Right Not to Know: some Steps towards a Compromise.

Authors:  Ben Davies; Julian Savulescu
Journal:  Ethical Theory Moral Pract       Date:  2020-10-29
  3 in total

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