{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,10]],"date-time":"2026-03-10T13:02:13Z","timestamp":1773147733513,"version":"3.50.1"},"reference-count":21,"publisher":"BMJ","issue":"1","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Med Ethics"],"published-print":{"date-parts":[[2010,1]]},"abstract":"<jats:p>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\u2019s 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\u2019 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 \u201cunnecessary\u201d in-vitro fertilisation procedures for unaffected parents, prospective parents are \u201cforced to know\u201d 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\u2019s disease. It concludes that the right not to know implies that PGD against Huntington should be allowed by means of the exclusion test.<\/jats:p>","DOI":"10.1136\/jme.2009.031047","type":"journal-article","created":{"date-parts":[[2009,12,21]],"date-time":"2009-12-21T18:48:14Z","timestamp":1261421294000},"page":"30-33","source":"Crossref","is-referenced-by-count":29,"title":["The right not to know and preimplantation genetic diagnosis for Huntington\u2019s disease"],"prefix":"10.1136","volume":"36","author":[{"given":"E","family":"Asscher","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"B-J","family":"Koops","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[2009,12,21]]},"reference":[{"key":"2024052300593390000_36.1.30.1","unstructured":"Office of Public Sector Information (OPSI). Human Fertilisation and Embryology Act 2008 c22. http:\/\/www.opsi.gov.uk\/acts\/acts2008\/ukpga_20080022_en_1 (accessed 5 Nov 2009)."},{"key":"2024052300593390000_36.1.30.2","unstructured":"Dutch Parliament. Dutch parliamentary debate on embryo selection: Handelingen II [Proceedings Second Chamber] 2007\u20132008 no 104, pp 7423\u201349; The Hague, 18 August 2008."},{"key":"2024052300593390000_36.1.30.3","unstructured":"Dutch Government. State Secretary of Health in Kamerstukken II [Documents Second Chamber] 2007\u20132008, 31 200 XVI, no 147, The Hague, 26 May 2008 (withdrawn) and 29323, no 46, The Hague, 27 June 2008 ."},{"key":"2024052300593390000_36.1.30.4","unstructured":"Dutch Government. Bijlage (BLG18986) bij Kamerstukken II [Documents Second Chamber] 2008\u20132009, 29323, nr 60, Regeling van de staatssecretaris van Volksgezondheid, Welzijn en Sport van februari 2009, CZ-TSZ-2912089, houdende regels ten aanzien van pre\u00efmplantatie genetische diagnostiek (PGD) (Regeling pre\u00efmplantatie genetische diagnostiek), p 8 ."},{"key":"2024052300593390000_36.1.30.5","unstructured":"Health Council of the Netherlands. Pre-implantation genetic diagnosis. The Hague, February 2009. Health Council of the Netherlands, 2006; publication no 2006\/01. ISBN-10: 90-5549-587-5."},{"key":"2024052300593390000_36.1.30.6","doi-asserted-by":"publisher","DOI":"10.1093\/hmg\/2.9.1475"},{"key":"2024052300593390000_36.1.30.7","doi-asserted-by":"publisher","DOI":"10.1042\/BJ20071619"},{"key":"2024052300593390000_36.1.30.8","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.69.5.574"},{"key":"2024052300593390000_36.1.30.9","doi-asserted-by":"publisher","DOI":"10.1086\/302374"},{"key":"2024052300593390000_36.1.30.10","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1097-0223(199812)18:13<1422::AID-PD499>3.0.CO;2-R"},{"key":"2024052300593390000_36.1.30.11","unstructured":"Husted J . Autonomy and the right not to know, In: Chadwick R, Levitt M, Shickle D, eds. The right to know and the right not to know. Farnham: Ashgate Publishing Ltd, 1997."},{"key":"2024052300593390000_36.1.30.12","doi-asserted-by":"publisher","DOI":"10.1136\/jme.2002.001578"},{"key":"2024052300593390000_36.1.30.13","doi-asserted-by":"publisher","DOI":"10.1163\/15718099920522730"},{"key":"2024052300593390000_36.1.30.14","unstructured":"Parfit D . Reasons and persons. Oxford: Oxford University Press, 1989."},{"key":"2024052300593390000_36.1.30.15","unstructured":"Gavaghan C . The defence of the genetic supermarket. The law and ethics of selecting the next generation. Chapter 4. Abingdon: Routlege-Cavendish, 2007:71\u2013100."},{"key":"2024052300593390000_36.1.30.16","unstructured":"Dutch Government. Brief staatssecretaris over het advies dat de Gezondheidsraad heeft gegeven t .a.v. pre-implantatie genetische diagnostiek en screening. Kamerstukken II [Documents Second Chamber] 2005\u20132006, 30300 XVI, nr 136, p 3. 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