Abstract
Dempsey, Nordqvist and Kelly’s recent publication in BioSocieties highlights the complexity of disclosure in donor conception, which is legally, ethically, and morally challenging. However, contemporary society means that donor-conceived people’s awareness of their conception history can no longer be controlled by their parents. Late, accidental, and non-parent disclosure is becoming more prevalent and can be distressing. Research has consistently found that openness in donor conception families from an early age is optimal, and that disclosure positively impacts rather than threatens family relationships. Despite this, disclosure can be difficult for parents, particularly if they perceive an unsupportive social context. Both donor conception and adoption literature has found more positive outcomes among disclosing families compared to non-disclosing families and interestingly, parents who have chosen to disclose have not reported regret. This response briefly discussed these important considerations and also notes some instances of inaccurate reporting and misleading information in their article.
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Response letter
Dear Editors,
In a January 2021 article, Beyond secrecy and openness: telling a relational story about children’s best interests in donor‐conceived families in BioSocieties, Dempsey, Nordqvist and Kelly question the widely held view of openness being most favourable within donor conception families (Dempsey et al. 2021). This article successfully highlights the wide, long-term implications of disclosure at an individual and family level. Through a sociological lens, it discussed in detail parents’ decision-making process within the family context and how this can influence parents’ choice or ability to be open about their conception journey.
Disclosure in donor conception families is certainly complex and challenging: legally, ethically, and morally. However, while different opinions regarding disclosure and non-disclosure are deserving of scrutiny in order to best support current and emerging donor conception families, Dempsey et al. oversimplify their argument regarding openness and disclosure. They suggest disclosure is an optional decision and one that lies solely with the parent/s. The paper does not adequately recognise the substantial evidence supporting disclosure; the increased prevalence of non-parental disclosure; the recommendations of the United Nations Convention on the Rights of The Child (1989), specifically the implications of non-disclosure on articles 7 and 8; and the longstanding family counselling principal that transparency of information, no matter how intolerable, enhances family relationships (Green 2003). This response briefly discusses these important considerations and also notes some instances of inaccurate reporting and misleading information in their article.
Dempsey et al. consider disclosure through a sociological lens, but a psychological perspective is also important. A growing body of psychological research presents a solid evidence base with large and varied samples of donor conception families (heterosexual, lesbian, solo, ova donation, sperm donation, etc.) that vary in conception experiences, including longitudinal research (Golombok 2015). Research focus has evolved considerably, and now recognises the increased probability and prevalence of non-parental disclosure, including discovery after Direct-to-Consumer DNA and ethnicity testing (Phillips 2016; Harper et al. 2016).
Attitudes are changing; disclosure is becoming more prevalent. Lampic et al. (2021) found it to be as high as 61% in ova donation and 58% in sperm donation families with children aged 7 to 8 years old. Dempsey et al. rely on older publications (e.g. Kovacs et al. 2012; Golombok et al. 2011) and argue that recipient parents are resisting disclosure. Kovacs et al.’s (2012) study however did not assess disclosure. Kovacs et al. evaluated community attitudes towards assisted reproduction using a random sample of 650 Australians and found attitudes from 1981 to 2011 had shifted towards approval. A later study by Kovacs et al. (2015) did investigate disclosure among a sample of recipient parents who were patients during Kovacs’ appointment at the clinic, which closed in 1994. As the offspring were aged 5 to 13 years at the time of data collection, and were reportedly conceived between 1989 and 1996, these data are unlikely to represent current disclosure attitudes. Low disclosure rates among the families in this research are also unsurprising given professional advice at the time was non-disclosure, which has long since changed (e.g. Ethics Committee of the American Society for Reproductive Medicine 2004).
Dempsey et al. also cite Golombok et al.’s (2011) study to support their premise that parents are resisting openness. Their report of no disclosure in a multinational sample is incorrect. Golombok et al. (2011) actually found 34% of families (all from the UK) had informed their children of their donor conception status by 7 years of age. They compared disclosing and non-disclosing families on a variety of parenting, relationship, and adjustment outcomes. Significant differences were found, specifically, more positive parenting and relationship outcomes within disclosing families compared to non-disclosing families; with mother–child interactions significantly poorer in non-disclosing families. This has also been reported by mothers and their adolescent offspring (Ilioi et al. 2017). The results of these studies do not support the proposition that disclosure is a ‘threat’ to family functioning, parenting, relationships, or offspring adjustment.
Dempsey et al. argue that disclosure of donor conception is a parental decision. This fails to recognise the prevalence of many independent pathways to discovery. A recent online, multinational survey found only 48% of those who were aware of their donor conception origins reported disclosure via parents, and that the most common form of non-parent disclosure was via Direct-to-Consumer DNA testing (37%; We are Donor Conceived 2019).
Dempsey et al. focus on legislation in the state of Victoria in Australia. This legislation, developed with extensive consultation with the donor conception community (Allan 2016), allows donors to request contact with adult offspring via the Victorian Assisted Reproduction Treatment Authority (VARTA), irrespective of family disclosure status (Assisted Reproductive Treatment Act 2008), and allows Victorian donors and adult offspring to request contact with each other. One motivation for the legislation was a perceived need to support donor-conceived individuals who might be at genetic risk because they were unable to access information under earlier legislation.
Disclosure through a third party such as VARTA may indeed be distressing, as Dempsey et al. point out, and this may be compounded by possible medical revelations. Nonetheless, this stress could be avoided through early parental disclosure. Further, the legislation may save lives across generations by giving donor-conceived people the opportunity to obtain and report accurate medical information, not biased by incorrect information based on non-genetic parental medical history. The suggestion by Dempsey et al. that the legislation is ‘ineffective’ oversimplifies the issue, and arrives at an inappropriate conclusion.
Lastly, it is important to question Dempsey et al.’s view of openness as a ‘threat’, and their discussion of negative experiences after disclosure that may in fact be a consequence of disclosure taking place in an unsupportive social context. More recent liberalisation of attitudes towards new and alternative family forms means that the social context for disclosure has become more supportive, with some donor-conceived people reporting improved family relationships as a result of disclosure (Daniels 2020; Mogseth 2019). There is extensive evidence from adoptees of similarly positive outcomes when parents are open about adoption (Baden et al. 2019). This suggests that it is the context and attitudes towards donor conception that need to change, not the level of information that donor-conceived people are permitted to receive about themselves. It is also noteworthy that parents who do decide to disclose have not been found to regret the decision (Applegarth et al. 2016; Mac Dougall et al. 2007).
The contemporary reality is that beyond early childhood, disclosure is not a decision, and offspring awareness can no longer be controlled by parents. Instead, the potential for discovery is high in contemporary society and research is needed to understand the impact of late, accidental, and non-parent disclosure, and to better support those that will be most profoundly affected—the donor-conceived people.
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Macmillan, C.M. Openness in donor conception families. BioSocieties 19, 149–153 (2024). https://doi.org/10.1057/s41292-021-00265-1
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DOI: https://doi.org/10.1057/s41292-021-00265-1