Literature DB >> 16425486

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

Jane Wilson1.   

Abstract

This paper examines some arguments which deny the existence of an individual right to remain ignorant about genetic information relating to oneself--often referred to as 'a right to genetic ignorance' or, more generically, as 'a right not to know'. Such arguments fall broadly into two categories: 1) those which accept that individuals have a right to remain ignorant in self-regarding matters, but deny that this right can be extended to genetic ignorance, since such ignorance may be harmful to others, particularly those to whom one is genetically related (the 'harm to others objection') and 2) those which contend that, even if genetic ignorance is only self harming, it is not something to which individuals can rationally or morally claim to have a 'right' at all, since they defend their claims on autonomy-respecting grounds and ignorance is inimical to autonomy (the 'incoherence objection'). I argue that defenders of a right not to know have some plausible responses to the 'harm to others objection', they and their opponents reach an impasse in which both sides are left voicing concerns about the paternalistic implications of the other's point of view. I conclude that defenders of a right not to know would, therefore, advance their position further by analysing it in terms of values other than those of autonomy and rights.

Keywords:  Analytical Approach; Genetics and Reproduction

Mesh:

Year:  2005        PMID: 16425486     DOI: 10.1111/j.1467-8519.2005.00460.x

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


  19 in total

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2.  Can Broad Consent be Informed Consent?

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3.  The role of genetics in the provision of essential public health services.

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5.  The future of incidental findings: should they be viewed as benefits?

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6.  Ethical considerations when making exceptions to "rules" in psychiatry.

Authors:  Edmund Howe
Journal:  Innov Clin Neurosci       Date:  2014-01

7.  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

8.  Reporting actionable research results: shared secrets can save lives.

Authors:  Lawrence E Hunter; Christian Hopfer; Sharon F Terry; Marilyn E Coors
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9.  Reporting Incidental Findings in Clinical Whole Exome Sequencing: Incorporation of the 2013 ACMG Recommendations into Current Practices of Genetic Counseling.

Authors:  Lacey A Smith; Jessica Douglas; Alicia A Braxton; Kate Kramer
Journal:  J Genet Couns       Date:  2014-11-18       Impact factor: 2.537

Review 10.  Review of the Ethical Issues of a Biomarker-Based Diagnoses in the Early Stage of Alzheimer's Disease.

Authors:  Gwendolien Vanderschaeghe; Kris Dierickx; Rik Vandenberghe
Journal:  J Bioeth Inq       Date:  2018-03-12       Impact factor: 1.352

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