Page URL: https://www.bionews.org.uk/page_143093

The open future of donor conception

3 June 2019
Appeared in BioNews 1000

In a recent commentary, Professor Guido Pennings outlined his views on donor anonymity and DNA-testing databases (see BioNews 999). Professor Pennings seems to advocate for the contractual rights of anonymous donors by placing such in opposition to the increasingly recognised, if not yet codified in law, moral rights of donor-conceived people.
 
While not a scientist or academic, I am an infertile man and father to three children conceived by donor sperm, and I have extensive experience facilitating support groups centered on donor-conception. As such, I can share my lived-experience. In my experience, Professor Pennings' proposed solution is counter-productive.

Readers may be surprised that as an infertile male, whose children were conceived by another man's sperm, I advocate for openness and against anonymity. It might seem I have more to gain from secrecy.

After all, by speaking out I risk social stigma from those who would diminish my status as a man or a parent. My wife and I share the common concern that a non-anonymous donor could interfere with how we rear our children. We can also empathise that sperm donors may have reciprocal concerns leading them to require anonymity, so that recipients won't solicit money or support.

But to my mind, donor-conceived people have an inalienable right (even if unrecognised by law) to the information regarding their genetic origins. My children's rights as donor-conceived persons were not mine to sign away in a contract, regardless of what I signed.

I came to these views by hearing about the impact of secrecy first-hand from those who discovered by surprise their donor-conception origins. I was further influenced by my participation in adoption training early in our fertility journey where I learned that the adoption context provides helpful, if not directly analogous lessons.

Fortunately, my wife and I found a donor willing to proceed on the basis of a limited form of anonymity, commonly called identity release. In our identity-release agreement, each of our donor-conceived children is guaranteed that after reaching age 18 they can apply for and receive identifying information about their donor. As parents, we felt this compromise addressed our concerns while respecting the rights of our children as persons.

Current social trends seem to echo our choice. As I attend fertility conferences, I see rapid moves by gamete banks toward ending donor anonymity, even if they're not yet in a position to address already-contracted anonymous donations. Several gamete banks, including Xytex, one of the largest in the USA, have committed to providing only gametes from donors agreeing to identity release. Unfortunately, recent moves towards openness fail to provide justice for people conceived by donor gametes where anonymity is protected by contract law.

For nearly 15 years, I've participated in group work supporting hundreds of people involved in donor conception each year. For the past eight years, I've organised and facilitated these groups. Our participants include intended parents, parents of donor-conceived people, psychosocial professionals, and donor-conceived people.

In each of these conversations, concerns such as those mentioned above are common. But more and more, participants look to disclosure to provide a just path forward for all parties. As Professor Pennings acknowledges, donor-conceived people from all and varying backgrounds increasingly turn to ancestry DNA testing and databases along with social media to connect the missing dots in their understanding of their identity and heritage.

While these developments may present a welcome counterbalance to the injustice done to anonymously donor-conceived people, such changes in social norms and technological capability creates a risk of new injustices. And here is where Professor Pennings' arguments ring most true.

Many donor-siblings will be suddenly and surprisingly confronted with facts that don't fit their self-conception and worldview. Many parents who expected the nature of their child's conception to remain a secret will now face possibly uncomfortable questions. Many donors will face information and conversations they never expected, and that violate the terms on which they participated.

Rightly or wrongly, guarantees of anonymity are made to donors, secrets are kept from children, and any one of us could receive contact from someone claiming to be related. None of these participants are prepared for these conversations.

All parties, including donors, have rights and we need to find ways to respect those. However, calling for a ban on DNA testing, and bolstering anonymity are steps in the wrong direction.

In our small corner of the world, we are helping people integrate donor conception into their self-concept and find peace with their genetic context. If our experience is any indication, more support is needed, urgently, as the tidal wave of unanticipated disclosure is only beginning.

The future for social justice in donor conception leads toward openness and support, not bans and anonymity. Let's find ways to take this journey together.


The issues raised in this article will be discussed at the Progress Educational Trust's free-to-attend public event 'Anonymous No More? Donor Conception and Direct-to-Consumer DNA Testing' in London on the evening of Wednesday 19 June 2019.

Find out more here and register to attend here.

SOURCES & REFERENCES
RELATED ARTICLES FROM THE BIONEWS ARCHIVE
24 June 2019 - by Dr Yvonne Collins 
The Progress Educational Trust (PET), which publishes BioNews, held a public event in London to discuss direct-to-consumer genetic testing in relation to donor anonymity...
20 May 2019 - by Professor Guido Pennings 
More and more people are using DNA testing websites. The curiosity about one's ancestry seems to be growing, especially in the USA. In doing so, millions of people are giving away all rights to their genetic information without much concern about what can or will be done with it...
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Comment (User:109337 - 05/06/2019)
Very well said...
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