The right not to know and preimplantation genetic diagnosis for Huntington's disease.

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 (PGD). 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.

journal_name

J Med Ethics

authors

Asscher E,Koops BJ

doi

10.1136/jme.2009.031047

subject

Has Abstract

pub_date

2010-01-01 00:00:00

pages

30-3

issue

1

eissn

0306-6800

issn

1473-4257

pii

36/1/30

journal_volume

36

pub_type

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