The Best Interests of the Child and the Return of Results in Genetic Research: International Comparative Perspectives

(2014) 15:72 BMC Medical Ethics, 1

13 Pages Posted: 23 Jul 2015 Last revised: 24 Jul 2015

See all articles by Ma'n H. Zawati

Ma'n H. Zawati

McGill University - Centre of Genomics and Policy

David Parry

McGill University - Centre for Genomics and Policy

Bartha Knoppers

McGill University - Centre for Genomics and Policy

Date Written: February 10, 2014

Abstract

Paediatric genomic research raises particularly challenging questions on whether and under what circumstances to return research results. In the paediatric context, decision-making is guided by the best interests of the child framework, as enshrined in the 1989 international Convention on the Rights of the Child. According to this Convention, rights and responsibilities are shared between children, parents, researchers, and the state. These "relational" obligations are further complicated in the context of genetic research.

A comparative review of international, regional and national documents on the return of research results reveals that there is a dearth of normative documents in the paediatric context. The best interests of the child framework is increasingly complicated by a growing appreciation of pediatric autonomy and the development thereof; parental rights (particularly when parents are affected by the genomic information of their children); and the right not to know.

This comparative analysis reveals that policy-makers and legislators have responded to the above challenges in different ways. Nevertheless, in Europe as well as in Canada, there is an emerging trend towards making the return of certain results mandatory in the paediatric context, should this course of action prove to be in the best interests of the child.

Keywords: Best interest of the child, return of results, genomic research, paediatrics

Suggested Citation

Zawati, Ma'n H. and Parry, David and Knoppers, Bartha, The Best Interests of the Child and the Return of Results in Genetic Research: International Comparative Perspectives (February 10, 2014). (2014) 15:72 BMC Medical Ethics, 1, Available at SSRN: https://ssrn.com/abstract=2632721

Ma'n H. Zawati (Contact Author)

McGill University - Centre of Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

David Parry

McGill University - Centre for Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

Bartha Knoppers

McGill University - Centre for Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

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