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The Fertility Show


 

Donor-conceived people do benefit from being told about their conception

30 May 2017

By Professor Eric Blyth, Dr Marilyn Crawshaw, Iolanda Rodino, and Dr Petra Thorn

Appeared in BioNews 902

Professor Guido Pennings' provocatively entitled BioNews commentary 'Donor children do not benefit from being told about their conception' (see BioNews 900) purports to highlight the shortcomings of existing research supporting a pro-disclosure agenda, and castigates counsellors and researchers who advocate parental disclosure. Pennings' commentary follows up and repeats much of the contents of his longer paper published in Human Reproduction to which we and 35 other researchers, professionals and members of the donor conception community from around the world have since responded.

Professor Pennings' own views on non-disclosure of donor conception and the associated topic of donor anonymity are well known, so it is not surprising that he is out of step with the views with which we have been associated over the years. However, as an experienced academic and researcher himself, and as someone asserting the need for evidence-based policy and practice, we are extremely disappointed that Professor Pennings' recent comments fall short of the academic rigour readers might have reasonably expected.

First, Professor Pennings seems happy to condemn counsellors for their alleged failings: 'Beliefs are expressed and pushed upon during counselling; this is an outright violation of the non-directiveness rule that stipulates that the moral values and views of the patients (parents and would-be-parents) must be respected.' But he does not cite any supporting evidence whatsoever (we know of none). Discussing contemporary research findings, including their limitations, with potential recipients of donated gametes/embryos neither equates with 'pushing' beliefs upon a patient nor violates the principles of non-directive counselling. On the contrary, it provides a valued opportunity for prospective parents to arrive at well-informed decisions through seeking clarification where needed, talking through any fears and uncertainty - particularly in relation to future parent-child relationships - and exploring possible disclosure strategies.

Second, Professor Pennings ignores the legal and policy mandates in several jurisdictions, multi-disciplinary professional bodies' guidelines and international human rights conventions which encourage parental disclosure through acknowledging donor-conceived individuals' right to knowledge of their origins [1]. For example, the UK's Human Fertilisation and Embryology Act 1990 Section 13 6C (as revised in 2008) requires clinics offering donor conception to inform prospective recipients of donated gametes and embryos of:

  1. the importance of informing any resulting child at an early age that the child results from the gametes of a person who is not a parent of the child, and
  2. suitable methods of informing such a child of that fact.

Third, the research Professor Pennings selected for critique forms only part of the available research evidence (for example, see Blyth and colleagues [2] for a more comprehensive review of relevant literature). The quality of Professor Pennings' review and analysis fails to meet normal expectations of a scholarly literature review. Professor Pennings also ignores relevant transferable research evidence on the impact of disclosure issues on the psychological and social well-being of adopted children and adults and that of secrecy in families.

Fourth, the available research, including the research he says he has analysed, provides a far more nuanced analysis of disclosure of donor conception than he asserts, with authors appropriately and thoughtfully taking account of such matters as child development perspectives and social context in their discussions [2-6]. Contrary to his conclusions, there is reliable evidence that the earlier donor-conceived children learn about the nature of their conception, the more favourable the outcomes both for the individual's identity formation and for family relationships. Evidence also reports that discovering one's donor conception later in life and/or in unplanned ways can result, for some, in long-term psychological distress and impair inter-familial and inter-personal relationships.

Fifth, in proposing that disclosure provides no benefits, Professor Pennings negates both the methodology of qualitative research and its recruitment methods, even though it has enabled the reporting of the lived experiences of those for whom disclosure has mattered most: donor-conceived individuals. In a research field severely hampered by the promotion of secrecy since the outset of donor conception as a medical procedure, qualitative findings significantly add to our understanding and are crucial to the development of well-informed evidenced-based practice.

Those with genuine intent to know about the needs of individuals born from donor conception do not need to search too hard.[2-6] With the advent of biotechnology and DNA registries, the question no longer remains whether there should be disclosure to children born following donor conception.[6] Rather, the focus should be on the what, how and when to disclose, and how these can best be achieved by parents within the intricacies of their sociocultural worlds.

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

26 June 2017 - by Dr Kylie Baldwin 
New technologies, procedures, and developments in reproductive science such as egg freezing, mitochondrial donation and genome editing have occupied many column inches, as well as much public and academic discussion in recent years. However, the topic of gamete donation remains an area of interest and continued site of controversy...
05 June 2017 - by Professor Vardit Ravitsky, Dr Juliet Guichon, Marie-Eve Lemoine, and Professor Michelle Giroux 
In his commentary, Professor Guido Pennings argues there is no empirical evidence to support the assumption that it is in the best interests of children to know that they are donor conceived. We would like to add another layer to the critique, by focusing on the conceptual foundation underlying the right of donor-conceived people to know their genetic origins...

22 May 2017 - by Susan Tranfield 
Olivia Montuschi's revised 'Telling and Talking' booklet aims to guide parents of donor conceived children aged 17 or over through the delicate process of disclosure...
15 May 2017 - by Professor Guido Pennings 
For some years now, counsellors and psychologists have been spreading the message that it's in the best interest of children to know if they are donor conceived. However, my recent literature review has shown that there is in fact very little empirical evidence to support this position...

HAVE YOUR SAY
Common sense and good science prevail. (Andromedary - Updated on 30/05/2017)
Thank you for responding to Pennings' piece.
I did not like that it was published at all, but in retrospect, better to let it be seen and then put in its place by respected scientists.
Calm and logic prevail (oliviam1 - Updated on 31/05/2017)
Hurrah, thank you all four for your calm and clinical dismantling of the Pennings piece.  I agree very much with the above comment and am now glad that this man's slanted perspective of the research (such as it is) have been exposed as the biased sham that they are.  
Thank you (SDK - Updated on 02/06/2017)
Thank you for advocating for us.  Let's hope that our humanity will soon become evident enough to others that it will no longer be necessary for academics to tell other academics that donor-conceived people care about genetics as much as any other human.  That is, a lot.

It is painful that the mistakes of adoption are being made again with donor gametes.  One day, the "don't know yet" donor conceived children will sue the researchers who studied them for so long and I believe their feelings on the matter will become fairly obvious.

Perhaps someone should try a DNA test on Pennings and see whether there is a personal motive behind all his bad science.  Generally, people with an interest in keeping secrets have secrets of their own to hide.

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Published by the Progress Educational Trust

CROSSING FRONTIERS

Moving the Boundaries of Human Reproduction

Public Conference
London
8 December 2017

Speakers include

Professor Azim Surani

Professor Magdalena Zernicka-Goetz

Professor Robin Lovell-Badge

Sally Cheshire

Professor Guido Pennings

Katherine Littler

Professor Allan Pacey

Dr Sue Avery

Professor Richard Anderson

Dr Elizabeth Garner

Dr Jacques Cohen

Dr Anna Smajdor

Dr Andy Greenfield

Vivienne Parry

Dr Helen O'Neill

Dr César Palacios-González

Philippa Taylor

Fiona Fox

Sarah Norcross


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