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.
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Funding This article was written as part of a PIONIER research project on biotechnology regulation, funded by the Netherlands Organisation of Scientific Research.
Competing interests None.
Provenance and Peer review Not commissioned; externally peer reviewed.
↵i In these cases (ie, exclusion test and non-disclosure test), parents must be willing to be informed about their own situation (our translation, EA/BJK).
↵ii This means that the fourth chromosome of the affected side of the family is excluded. If, for example, the maternal grandfather is affected, the selection will be against his fourth chromosomes, which means that only embryos will be implanted that carry the fourth chromosomes of the unaffected maternal grandmother, thus leading to the birth of Huntington-free children. As the selection targets the whole fourth chromosome, it remains unknown whether this chromosome and thus the prospective mother carries the affected gene. Some have likened this to sex selection in order to avoid sex-linked diseases.10
↵iii Namely the practical difficulty of keeping the information on the genetic status a secret for the parents; the fact that medical personnel will know the second time that the treatment is superfluous.10
↵iv Article 5c UNESCO Universal Declaration on the Human Genome and Human Rights. Also Council of Europe, Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Medicine, Oviedo, April 1997, aArticle 10(2): “Everyone is entitled to know any information collected about his or her health. However, the wishes of individuals not to be so informed shall be observed.” Although The Netherlands, like the UK, has not ratified the Oviedo Convention, the right is firmly established in Dutch law through article 7:449 Dutch Civil Code: the patient is not informed against his will, unless other interests outweigh the disadvantages of knowing.