Have you seen the findings of the We Are Donor Conceived 2020 survey?

This blog is written with counselors, clinics and other professionals involved in the Assisted Reproduction Technology (ART) industry in mind.

Having read the latest We Are Donor Conceived survey we realised that the ART industry has a significant responsibility to donor conceived children.

We Are Donor Conceived is an online space designed for donor conceived people to share their stories and find information and resources. They conducted their 2020 survey to “provide greater understanding about the feelings, perspectives, and experiences of people conceived via gamete donation”. For anyone in the industry the results provide much food for thought. You’ll find a link to the full survey results below, but here are some of the findings we found most interesting.

* Picture courtesy of We Are Donor Conceived

A little bit of context

Survey participants included a range of ages between 13 and 74, with responses from people born in 15 different countries including the UK, Germany, Canada, and the USA. Most participants were female, 95% of them conceived via sperm donation, and the majority of these indicated that the donor was anonymous. 4% indicated that the parent’s fertility doctor used his own sperm to conceive them.

When asked about their upbringing, 78% were raised by heterosexual parents, 16% by a single parent, and 6% by same-sex parents. Nearly half of respondents grew up with a donor conceived sibling or an adopted sibling.

That’s the basics out of the way, now onto the findings.

Learning about being donor conceived

This section was an incredibly interesting read. It shows that participants, the majority of whom are aged between 20 and 40 years old and so would have been conceived in the 80’s and 90’s, were mostly not told about their origins growing up. It is a real shame to see that a shocking 34% of respondents were not told at all, and found out their truth as a result of taking a commercial DNA test. This, of course, would have a negative effect on the way they view their origin, and potentially damaging to their mental health, something which is picked up later on in the survey.

Among respondents who were told by their parents, 34% were told at older ages, either as a teenager or an adult. 21% have known since they were a child or infant, something which we at Sensitive Matters strongly encourage.

When these results are segmented further into 3 groups, those born before 1990, those born in the 1990’s and those born between 2000 and 2006, the data paints quite a positive picture of how things are changing for the better when it comes to openness about the complex subject. Of those born before 1990, just 19% indicated that they were told as a child or infant (0% of respondents from before 1969 were told!). This number jumps in the 1990’s – a decade often seen as a turning point for openness and transparency, to 38% of respondents learning about their donor conception as an infant or child. This number jumps once again as the times change and society becomes more accepting, to 60% of respondents born between 2000 and 2006. We found it unsurprising that 76% of respondents who were raised by a single mother or same-sex parents learned about their origins as a child or infant, compared to just 9% of those raised by heterosexual parents.

Lived experience of donor conception

Moving on from the action of telling / being told about donor conception, it’s important to look at the results and repercussions of finding out, negative and positive, and comparing the difference in feelings between when this information was disclosed.

We Are Donor Conceived visualised respondent’s feelings to some of these questions with a word cloud (see the picture heading up this story). They were asked to reflect on how being donor conceived makes them feel presently, and then the words used were put into a visualisation, with words most commonly used appearing the largest. The 5 largest words are: curious, unique, sad, isolated and angry. Along with the rest of the words cited, this creates a striking visualisation of how complex the nature of being donor conceived is. It is important however, to remember that 57% of respondents found out their origins as an adult, or through DNA testing, which would likely have a significant impact on the way they feel compared to those who had known the truth for most, if not all, of their life.

This is looked at in more detail in the “Comparing late and early discovery” section. Those who learned they were donor conceived before the age of 3 were significantly more likely to categorize their experience as positive compared to those who found out after age 3. These participants were also less likely to feel distressed, angry or sad about their method of conception. These findings are incredibly important, especially to us here at Sensitive Matters. We have always encouraged parents to raise the complex issue of donor conception from a young age, and our Magic of You books are designed specifically for toddlers and young children.

The responsibility of the ART industry

Respondents felt the ART industry had a major role to play in driving openness. 92% of those surveyed agreed with the statement “The ART industry has a responsibility to act in the best interest of the people it helps to create”. A mere 1% of respondents disagreed with this statement.

And what does this responsibility entail? Well, 70% of respondents believe they have been harmed by not knowing the donor’s identity and 80% believe they have been harmed by not knowing the donor’s medical history. So in our view the ART industry needs to do everything possible to encourage openness.

Openness starts with telling your children they are donor conceived. In all likelihood questions about donor siblings will come next. The donor’s identity and medical history follows.

Parents should be encouraged and supported with the task of telling. Clinics and counsellors should provide this encouragement, along with guidance as so how to go about it. We hope they will see The Magic of You as a useful tool to facilitate this.

The full picture

So, the findings of this survey are compelling – openness is essential. We highly recommend you follow the link below to read the full report which goes into much more detail about the impacts of DNA testing, preferred terminology, siblings, contact and relationships with donors, moral responsibilities of parents and donors, and more.