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      The right to know one’s genetic origins and cross-border medically assisted reproduction

      editorial
      Israel Journal of Health Policy Research
      BioMed Central

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          Abstract

          The use of donor sperm or egg for reproduction raises the issue of the right of donor-conceived individuals to know their genetic origins. This paper argues in favor of acknowledging such a right and explores the challenges that cross-border medically assisted reproduction would raise in relation to it. It first explores possible justifications for such a right by discerning its possible conceptual and empirical groundings. It describes some key ethical and policy implications of the removal of donor anonymity. It then argues that novel technologies such as mitochondrial replacement and gene editing raise new concerns in this area and may expand the scope of such a right. Finally, it argues that while many barriers to accessing information about genetic origins already exist at national levels, cross-border medically assisted reproduction may exacerbate a reality in which many individuals conceived through third-party participation are deprived of information that may be crucial to their future well-being for medical or psycho-social reasons.

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          Most cited references24

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          Donor-conceived people's views and experiences of their genetic origins: a critical analysis of the research evidence.

          This article reports on a systematic review of English language, peer-reviewed publications from 13 empirical studies with donor-conceived children and adults regarding their experiences and perceptions of donor conception. A total of 19 articles that met the inclusion criteria were reviewed. These were identified by means of a bibliographic search of four electronic databases for the period 1990-2011 and supplemented by the authors' personal knowledge of work in this field. No reports from such studies appeared prior to 2000, and more than half have been published since 2008, demonstrating the relative novelty of research in this field. Much of the reviewed research evidence concerns individuals conceived through sperm donation conducted under a regime promoting both anonymity and nondisclosure. Consequently, there is little research that pertains to individuals conceived through other forms of collaborative reproduction, nor to those conceived under arrangements and regimes in which early parental disclosure is both advocated and practised and the identity of the donor and of other genetic relatives may be accessible to donor-conceived individuals. The studies consistently report that most donor-conceived people have an interest in securing information about their genetic and biographical heritage - more information than most of them have been able to obtain. Although a number of methodological limitations in the research base are identified, the authors conclude that the evidence is sufficiently robust to promote the implementation of policies and practices that promote transparency and openness in collaborative reproduction, thus reflecting the importance of maximising future choices and opportunities for donor-conceived people.
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            Gamete donation and anonymity: the ethical and legal debate.

            L Frith (2001)
            The British government is currently considering whether to review the law on information provision for donor offspring. This paper therefore provides an overview of the current international legal situation relating to donor anonymity and a review of the key arguments and evidence on both sides of the debate. While the British government is considering all aspects of information giving, both identifying and non-identifying donor information, this paper will focus on the most contentious issue: the provision of information that would identify the donor. The current legal situation in the UK and internationally is examined, drawing attention to a possible international trend towards more information giving. The evolution of the present British system is outlined and it is asked whether some of the concerns and values that gave rise to the practice of anonymous donation are still relevant today. Looking at the concept of a child's right to know their biological identity it examines the possible basis of such a right and its potential conflict with the perceived interests of the child's parents. Finally, some of the practical obstacles to non-anonymous donation are evaluated. The paper concludes that a review of the British law is both timely and desirable.
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              Informing offspring of their conception by gamete or embryo donation: a committee opinion.

              (2013)
              This document discusses the ethical implications regarding informing offspring of their conception using gamete or embryo donation. It replaces the 2004 ASRM Ethics Committee document of the same name (Fertil Steril 2004;81:527-31). Copyright © 2013 American Society for Reproductive Medicine. Published by Elsevier Inc. All rights reserved.
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                Author and article information

                Contributors
                Vardit.ravitsky@umontreal.ca
                Journal
                Isr J Health Policy Res
                Isr J Health Policy Res
                Israel Journal of Health Policy Research
                BioMed Central (London )
                2045-4015
                16 January 2017
                16 January 2017
                2017
                : 6
                : 3
                Affiliations
                School of Public Health, University of Montreal, Montreal, Canada
                Article
                125
                10.1186/s13584-016-0125-0
                5240377
                28096974
                7da1b695-4d30-4631-bfd3-5a995a76007b
                © The Author(s). 2016

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 23 November 2016
                : 2 December 2016
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                © The Author(s) 2017

                Economics of health & social care
                Economics of health & social care

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