Law, ethics and medicine: The right not to know and preimplantation genetic diagnosis for Huntington’s disease

Journal of Medical Ethics 36 (1):30-33 (2010)
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Abstract

The right not to know is underappreciated in policy-making. Despite its articulation in medical law and ethics, policy-makers too easily let other concerns override the right not to know. This observation is triggered by a recent decision of the Dutch government on embryo selection for Huntington’s disease. This is a monogenetic debilitating disease without cure, leading to death in early middle age, and thus is a likely candidate for preimplantation genetic diagnosis. People possibly affected with the Huntington gene do not always want to know their genetic status themselves, which is very burdensome knowledge. For prospective parents, this creates a difficulty in having unaffected children through embryo selection without knowing their own genetic status. A solution is provided by the exclusion test: it allows embryo selection while honouring the parents’ right not to know. The Dutch government however disallowed the exclusion test and chose to allow PGD on Huntington only for parents who test themselves first. To avoid “unnecessary” in-vitro fertilisation procedures for unaffected parents, prospective parents are “forced to know” before they can conceive through embryo selection. This article analyses the scope of the right not to know in the context of embryo selection against Huntington’s disease. It concludes that the right not to know implies that PGD against Huntington should be allowed by means of the exclusion test

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Citations of this work

Please Don’t Tell Me.Jonathan Herring & Charles Foster - 2012 - Cambridge Quarterly of Healthcare Ethics 21 (1):20.
Please Don’t Tell Me.Jonathan Herring & Charles Foster - 2012 - Cambridge Quarterly of Healthcare Ethics 21 (1):20-29.
The Right Not to Know and the Duty to Tell: The Case of Relatives.Niklas Juth - 2014 - Journal of Law, Medicine and Ethics 42 (1):38-52.
The Right Not to Know and the Duty to Tell: The Case of Relatives.Niklas Juth - 2014 - Journal of Law, Medicine and Ethics 42 (1):38-52.

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References found in this work

Reasons and Persons.Derek Parfit - 1984 - Oxford, GB: Oxford University Press.
Reasons and Persons.Joseph Margolis - 1986 - Philosophy and Phenomenological Research 47 (2):311-327.
The right not to know: an autonomy based approach.R. Andorno - 2004 - Journal of Medical Ethics 30 (5):435-439.
Bioethics Today, Bioethics Tomorrow: Stem Cell Research and the "Dignitarian Alliance".Roger Brownsword - 2003 - Notre Dame Journal of Law, Ethics and Public Policy 17 (1):15-52.

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