Disclosure and donor-conceived children

Sir, Guido Pennings’ views on favouring donor anonymity are well known. However we were very concerned at your decision to publish and then highlight his article Disclosure of donor conception, age of disclosure and the well-being of donor offspring (Pennings, 2017) which, in our view, fell significantly short of the academic rigour we expect of Human Reproduction and its peer review and editorial processes. The signatories to this letter come from the fields of academia, professional practice, parent/family/donor-conceived support groups and donor registry services. The research evidence concerning the impact of disclosure and age of disclosure on donor-conceived people and their family members is very limited, both in terms of numbers and range of participants, numbers of research teams working in this field and methodologies used, including sampling across all studies. There are to date no large-scale studies. This was not made clear: more than this, Pennings considered that the evidence was in fact sufficient to make claims based on it, not least through disproportionately weighting selected studies and ones which used primarily parental reports (which form the bulk of existing studies) over those from donor-conceived individuals, which he claimed used biased samples. He went on to attribute morality (‘parents should disclose’) rather than knowledge as the reason Kovacs et al. (2015) and the Nuffield Report (2013) recommended disclosing. In doing so, he ignored Nuffield's emphasis on adolescent psychological development as a key plank of their decision and Kovacs et al.’s attention to the Australian cultural context. With regard to the latter, Pennings instead chose to represent this approach as being so at odds with their findings as to question their motivation as researchers (‘One wonders why they have done the study in the first place’) rather than acknowledge its validity. Unlike Pennings, some of those he singled out for criticism thoughtfully discuss the complexity of measuring outcomes as evidenced by, for example, Freeman and Golombok (2012) when they said: ‘However, differences between disclosing and non-disclosing families cannot be directly attributed to parents’ disclosure decisions and may reflect other differences between these families’. Both for these reasons and because research evidence only forms one part of what informs theory, policy and practice in any field—and perhaps especially where human relationships are concerned—the basic premise of Pennings’ paper is in our view academically flawed. Pennings omitted any reference at all to human rights, despite this being a key influence on change in this field as shown in current legislative moves in Germany, and dismissed personal experiences when captured through the grey literature or professional experience. Finally, and importantly, Pennings ignored the actual and potential impact of recent rises in DNA testing, including direct-to-consumer DNA testing, on the ability to maintain secrecy about involvement in donor conception given the resulting increased likelihood of unplanned disclosure and its associated risks (risks which Pennings chose largely to ignore). This despite a paper by Harper et al. (2016)‘The end of donor anonymity: how genetic testing is likely to drive anonymous gamete donation out of business being an earlier Human Reproduction ‘Editor's Highlight’ in 2016. Pennings went on to make critical remarks about counsellors and psychologists, ironically without citing any evidence to substantiate his claims and in the process minimizing multi-disciplinary support for openness as evidenced though such professional bodies’ guidelines as the American Society of Reproductive Medicine, the British Fertility Society, and the Australian and New Zealand Infertility Counsellors Association (ANZICA). His suggestion that counsellors and psychologists should be training parents who do not wish to disclose to ‘build a coherent and easy to maintain story’ is especially troubling; it is one thing to be expected to respect parents’ decisions (which psychosocial professionals do, in our experience), it is entirely another to expect them to teach parents how to lie to their children. Of course academics have the right to prompt debate and discussion on such important topics as disclosure and anonymity and we strongly respect that right; our concern here is that this paper has not met the standards that we would have expected from Human Reproduction.

Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.