Carrier testing in minors: a systematic review of guidelines and position papers

Title

Carrier testing in minors: a systematic review of guidelines and position papers

Creator

Borry P; Fryns JP; Schotsmans P; Dierickx K

Publisher

European Journal Of Human Genetics

Date

2006

Subject

PedPal Lit

Description

The objective of this article is to review all published normative ethical and clinical guidelines concerning the genetic carrier testing of minors. The databases Medline, Philosopher's Index, Biological Abstracts, Web of Science, and Google Scholar were searched using keywords relating to the carrier testing of children. We also searched the websites of the national bioethics committees indexed on the websites of WHO and the German Reference Center for Ethics in the Life Sciences, the Human Genetics Societies of various nations indexed on the website of the International Federation of Human Genetics Societies and related links, and the national medical associations indexed on the website of the World Medical Association. We retrieved 14 guidelines emanating from 24 different groups. All guidelines advanced the following preferences: (1) carrier testing should not be performed in children, and (2) testing should be deferred until the child can give proper informed consent to be tested. The guidelines varied in three areas: (a) the role of genetic services in ensuring that children are informed about their carrier status and associated risks when they are older; (b) exceptions to the general rule of withholding or deferring carrier testing; and (c) the communication of incidentally discovered carrier status. In the absence of compelling reasons, carrier testing of a child can reasonably be deferred until the child has the intellectual capacity needed to discern if and when to be tested.
2006

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

133-8

Issue

2

Volume

14

Citation

Borry P; Fryns JP; Schotsmans P; Dierickx K, “Carrier testing in minors: a systematic review of guidelines and position papers,” Pediatric Palliative Care Library, accessed January 28, 2022, https://pedpalascnetlibrary.omeka.net/items/show/13210.

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