Survey of informed consent for registration of congenital anomalies in Europe

doi:10.1136/bmj.331.7509.140

BMJ 2005;331:140-141 (16 July), doi:10.1136/bmj.331.7509.140

Paper

Survey of informed consent for registration of congenital anomalies in Europe

Araceli Busby, lecturer in environmental epidemiology¹, Annukka Ritvanen, registry leader², Helen Dolk, professor of epidemiology and health services research and Eurocat project leader³, Nicola Armstrong, programme manager nursing⁴, Hermien De Walle, registry leader⁵, Isolina Riaño-Galán, paediatrician and expert on bioethics⁶, Miriam Gatt, registry leader⁷, Robert McDonnell, registry leader⁸, Vera Nelen, registry leader⁹, David Stone, registry leader¹⁰

¹ Eurocat Central Registry, London WC1E 7HT, ² Finnish Register of Congenital Malformations, PO Box 220, Helsinki, Finland, ³ Eurocat Central Registry, University of Ulster, Newtownabbey BT37 OQB, ⁴ R&D Office, Health and Social Services in Northern Ireland, Belfast BT2 8BS, ⁵ Northern Netherlands Registry, University of Groningen, Groningen, Netherlands, ⁶ Registry of Congenital Defects in Asturias, Oviedo, Spain, ⁷ Malta Congenital Anomalies Registry, University of Malta, M'Sida, Malta, ⁸ Dublin Registry, Eastern Health Board, Dublin 8, Ireland, ⁹ Antwerp Registry, Provinciaal Instituut voor Hygiene, Antwerpen, Belgium, ¹⁰ Glasgow Registry, Yorkhill Hospital, Glasgow G3 8SJ

Correspondence to: H Dolk h.dolk@ulster.ac.uk

The first 150 words of the full text of this article appear below.

Introduction

Eurocat is a network of population based registers of congenitalanomalies in Europe covering about a quarter of the birth populationin 19 countries (www.eurocat.ulster.ac.uk). We surveyed registrieswith regard to the requirement for informed consent and itsimplementation.¹

Participants, methods, and results

We sent a questionnaire on ethics and confidentiality developedby the Eurocat Working Group to 35 registries in 2003 and updatedJune 2004; 29 registries from 15 countries replied (table).Eight registries reported experience of opt-in informed consent.

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National legislation on informed consent for congenital anomaly and other clinical registers

Five registries depend on medical records and notification fromclinicians. One experienced a fall in registration (less than10 written consents in the entire year in which opt-in consentwas instituted, compared with 249 cases in the year before opt-in)such that an exemption was negotiated enabling a switch to opt-outconsent. Currently 0.1% of parents opt . . . [Full text of this article]

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