These are the voices of Donor Conceived People
By Clare McDougall, May 2023.
This survey is the culmination of our series looking into the levels of support offered by the fertility industry to recipient parents, donors and, most importantly, to the very people at the heart of the matter – the donor conceived people themselves.
The industry is all about creating people – but is it doing enough to support the people it helps to create? Is the industry too focussed on the commercial aspects . . . the here and now . . . rather than encouraging donors and recipient parents to put the interests of their future child front of mind. Is there enough education and awareness raising of what a donor conceived child might think or feel about their genetics, conception, blood relatives etc? And is there more the industry should or could be doing for donor conceived people?
This survey was live between 20 February and 31 May 2023. We promoted it on social media and asked our contacts to share it widely, these included, but were not limited to: @dccsupport, @d_c_network, @donorconceivedaotearoa, @dc_aust @donorconceivedcouncil, @dcp_journey_2_rp, @DNAsurprisenetwork, @donorconceivedadult, @donorconceived101, @wearedonorconceived and @donorchild.
Enormous thanks go to Melissa @dccsupport and Aimee @dc_aust for helping us pull the questions together.
The overall aim of this particular survey was to ask Donor Conceived People whether they were adequately supported and, to the best of their knowledge, whether their parents were adequately supported.
51 people completed our DCP survey, though regrettably none were from a single or two dad family.
Donor Conceived People Survey Headline Results
Where donor conceived responders are aware of what took place, they told us about . . .
Their Recipient Parents:
- In 89% of cases their recipient parents received no counselling.
- 43% ticked the box to say their parents received no support at all.
- In 91% of cases their parents received no resources (booklets, books, websites, groups etc) for talking to them about their genetic origins.
- 96% (49) think the Third Party Reproduction industry should do more to support recipient parents using donor gametes. They all specifically mention counselling or education/support that should be given in counselling sessions.
[In our Recipient Parent Survey:
- 38% had been offered no counselling at all before their baby was born.
- 95% were not offered counselling or any other support resources after the birth.
- 97% thought the fertility industry should do more to support parents using donor gametes with the psychological and social challenges of that choice, even beyond pregnancy.]
Their Genetic Parents:
- 93% of their genetic parent(s) received no support or counselling from the clinic or bank at the time of their donation for how best to support the donor conceived person at the relevant stage of their life.
- 84% think the Third Party Reproduction industry should do more to support people donating gametes. As one would expect, suggestions for support focused on how best to deal with inevitable DCP contact.
[In our Donor Survey:
- 70% said they didn’t receive any support from their clinic/ bank regarding how to navigate contact with people conceived from their donations.
- 88% felt the fertility industry should do more to support donors.]
We asked donor conceived people about the support they have personally received related to their donor conception and over half specifically included the word ‘none’ in their reply.
84% think the Third Party Reproduction industry should support community groups that provide support, education and advocacy to donor conceived people (funding was the most common response, followed by support with record keeping).
All three of our surveys have made it clear that the majority of people on the receiving end of The Fertility Industry – the donor conceived people, their recipient and their genetic parents – overwhelmingly feel more support is desperately needed.
Direct support is called for for donor conceived people in the form of counselling and support for Donor Conceived community groups.
More support for Recipient Parents is wanted, both before and after their baby is born. Readers are encouraged to read our blog as this is complex, but includes recipient parent education through exposure to DC voices, grief counselling and support with ‘telling’.
Donors need more support re how best to navigate inevitable contact. Again the blog sets out additional support needs.
This is a rich industry with lots of major players. It is heartwarming for us to see organisations like European Sperm Bank stepping up and really trying to put donor conceived people front and centre of their future strategy. It would be great to see others following suit, becoming industry leaders in the support they offer to donor conceived people, recipient parents and donors alike.
The Detailed Responses
Below are the detailed responses. We have included them in full as we believe by seeing the detail the reader gets the true uncensored impact. But please note that as the responses are direct quotes, they include language and opinions that are not necessarily those of Sensitive Matters.
Which of the following best describes the family you were brought up in?
Regrettably no single or two dad families completed our survey.
When did you find out you were donor conceived?
The majority of people answering this survey found out they were donor conceived when they were 18 years or older.
Please tell us briefly how you found out you were donor conceived.
The 18% that were told early included mostly positive comments:
- Told by my mum on many occasions from before I can remember!
- I have always known. My mum would tell me that I was a special baby conceived using a donor. It was not mentioned a lot growing up but I always knew and gradually understood as I got older.
- I was so little I feel like I always knew.
- My mom always explained it to me in words I could understand. I always had a photo of my donor on my bedside table.
- It was part of my life story.
- I don’t remember really, I was told so young. I remember being told my mom went to a doctor for help, but there was never a time when I didn’t know I was donor conceived.
And other more neutral comments:
- I asked where my dad was and a family member told me that my mom used a sperm donor.
- My mom told us. I was 3 or 4. She said I didn’t take it well. I don’t remember much but I remember being upset.
Those that found out aged 4-10 gave us the following comments:
- I was told after school in first grade.
- My parents just told my twin sister and me. I don’t know if they had been planning to or if they had been putting it off, or if something prompted them to tell. We were on vacation instead of at home, that was a little odd.
- My mom gave us the talk. She told us the science of it all in a way we'd understand.
- I think my parents eased me into the idea of our family being a little different from other families from early on when I started to understand. Different families are formed in different ways and may look different. When I was around 9 years old, my parent had the “bird and the bees talk” with me and got into deeper details about how sex, conception, and IVF worked, basically how babies were and could be made. My parents told me they wanted to have a child so much, so they went the IVF route with the help of the someone else, a donor, to bring me to them.
- It was brought up casually, something I sort of always knew in the back of my mind.
- I was at a group for people with gay parents, age 10, and other kids were talking about donors. I didn’t know what one was or how I was conceived. After the group I asked my parents about it, they told me, and I cried because I was confused and overwhelmed.
Comments from responders that found out aged 11-17 include:
- After asking my mother to tell me who my father was for years, she eventually told me the truth.
- I had been learning about it at school and I was talking to my mom about it. My dad had died about a year prior, and he never wanted me to know, but my mom told me almost a year after his death when I brought it up. I was 13 or 14.
- My mum told me when I was 13 as she didn't want it to be kept from me. I really appreciate her being honest, but it was hard because she told me not to tell my dad I knew and it felt very clear that this was not something I was supposed to talk about again.
- I was told in a family counseling session when I was 13.
- I always knew something wasn't right with my mum and one day while arguing, my mum got fed up and told me I was donor conceived. I was 17.
- Mother disclosed while talking about Dad’s family after my parents divorced, 1 week prior to her going to live overseas and me having to stay with my Dad for 3 months.
- I figured it out at age 12 after being pretty elaborately deceived due to a budding interest in genetic sciences.
- My mom told me out of the blue.
- I was in middle school and my parents sat me down before an endocrinology appointment and explained that when the doctor asked for family medical history, they wouldn’t be able to provide any on my dad’s side as they had used a sperm donor and didn’t have a medical history for him. They had previously told me that they had fertility struggles and used IVF so it wasn’t completely out of left field when they told me.
15 the 24 responders (63%) that found out when they were 18 years and above did so because of a DNA test. This group shared the following:
- My mother told my brother after he mentioned a DNA test, she waited a year before my brother finally forced her to tell me and my twin sister. She had no plans to tell us ever.
- I took a DNA test and was matched with 7 half siblings. The first person to reply to my message already knew she was donor conceived.
- Father just randomly decided to tell me. Totally out of the blue.
- My Dad's friend accidentally told my sibling.
- My mother told me as I was beginning my journey to motherhood.
- Mother spilled the beans after a post operative stroke when she was 75 years old. I was 49.
- Always suspected. Confirmed by DNA-test.
- My mom told me in passing conversation at age 36.
- My father was the victim of a homicide and my DNA did not identify his remains.
- My twin sister asked my mom about how we were conceived (we knew we were test tube babies, but not donor conceived) when she and I were about 26 and she told us.
- My brother confronted my mom about our genetics not making sense.
- Mom and non-bio dad told me when I was 21.
- Police compared my DNA to my dad’s and they didn’t match.
- DNA test my twin took, she told me.
- I took an ancestry DNA test out of curiosity about heritage and matched directly to my donor as my father and a handful of siblings.
- My mom told me while we were going 70 miles an hour down the highway.
What country was your parents’ clinic based in? We ask because counties have different rules around support.
To your knowledge did your parents receive any counselling from their clinic or bank for talking to you about your genetic origins and supporting you with any concerns and challenges you might face because of this?
As you can see from the blue and yellow sections in the chart below, a significant portion of respondents (61%) received no counselling, with half of these receiving no support at all.
31% of responders didn’t know whether their parents received any counselling – understandable, both because the question is about their parents at a time before they were even around or just after, and this was a long time ago – the responders are adults themselves.
Of those that did know, donor conceived people told us that in 89% of cases recipient parents received no counselling. Actually 43% ticked the box to say their parents received no support at all.
Did your parents receive resources from their clinic or bank for talking to you about your genetic origins?
Of those that did know, donor conceived people told us that in 91% of cases recipient parents received no resources (booklets, books, websites, groups etc) for talking to them about their genetic origins.
Please specify what support you’d like to see for recipient parents.
We have included the responses verbatim as we believe it will show interested parties the common themes and has more impact than if we were just to summarise the gist into a sentence or two:
- Encouraging recipient parents to deal with their infertility instead of projecting their feelings/fears onto their children, better counselling that explains that donor conceived people being curious/wanting to know/meet their donor isn't a threat and nothing against them.
- Reduction of the stigma of using donor sperm/egg so parents feel comfortable reaching out for support.
- Talk to them about the implications for the child and how the child might feel about being donor conceived.
- Counselling sessions are often required before using donor gametes today. However, I believe a lot more needs to be done. I would like to see the experiences of donor conceived adults being shared with the recipient parents. Clinics could give out leaflets/magazines/books/links to websites which share DCP experiences to recipients before they choose to use a donor. Fertility consultants will suggest gamete donation to patients without speaking to them about know vs anonymous vs open ID and what to do in the best interest of the child. Many patients will make these decisions uninformed. I believe clinics always do what they believe is best for the patient, the ultimate goal is helping them become pregnant with little consideration for the thoughts of the people they help create.
- The importance of generic mirroring and that a child's desire to connect with the donor family has nothing to do with their relationship with the recipient family.
- Full education on the implications of raising a DCP. The potential health/mental health risks. Genetic Bewilderment. Ethical donor conception. Childrens books to help explain donor conception. Resources for parents and DCP to meet other parents and DCP and share their experiences.
- I’d like to see anonymous gamete trafficking banned. RPs should be counseled severely, background checks, heavy medical testing, mental health etc. and not “counseling” done by the fertility clinic because we all know they’ll just say whatever bullshit they need to go sell human gametes. Yay capitalism.
- Mandatory counseling, before and after conception/birth of child, and insistence on disclosure to children.
- Honesty about success rates, intensive grief counseling - many recipients have not come to terms with their infertility and subsequent mental health challenges - this shit constantly gets projected onto the DC child and we all end up traumatised as hell with exaggerated pressure to succeed and alleviate their failures. Recipient parents need to be screened to see if they are in the right mental state to have children. Nobody ever gives a shit about the product of the treatment, just the tidy profit made for helping someone make a baby.
- Counseling based on what’s best for the child and not what’s best for the industry and parents’ egos.
- More counseling before making the decision to receive gametes and strongly recommend that recipient parents reveal the truth as soon as possible.
- I'd like to see resources written by donor conceived people sharing a range of experiences. It should be made clear to recipient parents that they need to be prepared to talk to their child about this from birth. The harm that can be caused by withholding information needs to be made very clear. Parents should also be told that they need to be prepared to support their child and let their child be honest with them about their feelings even if that includes anger and sadness. Parents also need to be prepared to support their child in finding information about and getting to know the donor and any half-siblings if and when the child wants that. Anonymous donation is never acceptable.
- I don’t know, I think more education, because my mother is baffled that I'm curious about my medical history and this whole other part of my DNA that I will likely never know. Also some preparation that some kids do want to reach out and look for relatives, my mom thinks that since I want to know them it must mean I hate her and want to replace her.
- DCP-centred parenting, resources (conversation starters, books, etc), and therapy.
- Psych screening and intensive counseling before gamete transfer.
- Better education about the potential consequence of their decision, be it their child's emotional wellbeing or medical challenges.
- UN human rights of the donor conceived child.
- I’m in a sibling pod of 14 and counting. Most of my siblings did not know they were donor conceived and only found out through commercial DNA tests. I’d like to see RPs encouraged to tell their children at a young age and explain in an age-appropriate manner with resources to do so. I’d also like to see better access to donor medical history that is regularly updated and given to RPs to assist with diagnosing any potential hereditary issues. Maybe a way for RPs who use the same donor to connect so that DC people can be aware of their siblings growing up.
- Therapy for infertility and education about raising a non-biological child and meeting their needs.
- Information about the best way to tell a child and the importance of and reasons for doing so.
- The ART community needs to go recognized there is a human product at the end of this pipeline. This isn’t about giving people a baby who really want it, it’s about how we support the human created.
- One counseling session is not enough and doesn’t guarantee parents will be open about the child’s donor conception or receptive to questions about genetics. Ongoing support and peer groups may help.
- Resources should have been given to my parents regarding how and when to tell me. Anonymous donating should be illegal.
- Anything is better than what it is now.
- Follow up education after having a child, including for parents of adults.
- Access to medical records without names in closed donor cases.
- Counseling regarding the needs of the donor-conceived child. Support legislative oversight to require: --Genetic testing of gamete donor --Provide genetic health history of gamete donor --Check background of gamete donor to ensure truthful information --Restrict the number of offspring per donor --Provide sibling registry to identify siblings to one another --Penalize blatant fertility fraud --Prevent international trafficking of gametes and surrogacy.
- Substantial counseling and resources for best practices concerning telling their donor conceived children.
- Counseling on telling children from the beginning and how to talk about in age-appropriate ways as their children grow. More information for parents about the potential challenges and struggles children may face as they age. An understanding of the harms caused by anonymous donation.
- Access to donor genetic history
- Mandatory counseling prior to IUI or IVF where parents are asked whether they intend to tell from birth. Families that do not should be turned away. I would also like to see donor conceived people's birth certificates marked in a special way so that families will know that their child will at minimum find out at age 18, when BCs are typically transferred to the young adult. In Australia this has achieved an almost 100 percent telling rate by age 18.
- Honesty from the start, selecting a donor with limited donations.
- Counseling for the parents who are struggling. Just anything they need.
- Intense training and advocacy for early disclosure.
- Required counseling, changes/impacts through the lifespan.
- Mandatory psych visits with teeth - they should be tested for personality disorders and screened for serious mental illness/criminality. There also just needs to be more, firm, evidence-based guidance on the importance of telling by age 3, and families that cannot agree to this should be turned away.
- Inform them that it’s not a matter of “if” your child will want to know their bio family it is “when”. Actually meeting donor conceived adults and asking them about their lives. Meeting late discovery adults and DCP who always knew. Meeting DCP who didn’t know and the unnecessary medical procedures. Talking to Adult DCP about the frequency and accuracy of medical updates they receive. Sitting down and meeting donors in person who have bio children older than 18 and have met their adult DC children to understand the relationship and impact on donors.
- All parents should receive extensive counseling regarding impact of DC on both their family, health implications without regulation, and impact on child.
- Information about the donor, information on how to connect with siblings on the child’s behalf to establish the social connections as siblings early and avoid genetic sexual attraction.
- How to navigate conversations about telling their children about their donor conception without making their children feel weird for being different. Being different is ok. I think my parents did a good job of that. Also more support in helping their child navigate the medical system and get health screenings. I think that would be best because sometimes genetic family history isn’t available or is unreliable. Health screenings and testing should be available to everyone, not just donor conceived people actually. It’s best to get information of the particular genetics that you were actually given.
- A full parenting guide and explanations about things such as genetic mirroring / genealogical bewilderment and the importance of the autonomy to define terms and relationships to the DCP’s needs, not the recipient’s wants.
- Not necessarily support for them, but support for them to support their donor conceived kids. Especially on Facebook and stuff like that, a lot of RPs are honestly unhinged and so closed-minded. It needs to change. They need to be able to realize the implications of what they are doing, both on themselves and their DC kids.
- Donor conceived led education.
- Talking about the harms of anonymity and the rights of DC kids. Encourage non-anonymous buying of gametes. The importance of not lying to your children.
- Advice on how to talk with your kids about donor conception and encouraging them to do it before age 3.
- More help/contact in general, more open lines of communication, not withholding information.
To your knowledge did your genetic parent(s) receive any support or counselling from the clinic or bank at the time of their donation for how best to support you (at the relevant stage of your life)?
Please specify what support you’d like to see for donors:
- Acknowledgement that they are creating their own biological children, not just helping people dealing with infertility. That the biological children they are creating may want contact. Encouraging them to be open to telling their family about donating. Their donation isn't just a cell, but 50% of DCP's DNA. DCP are their biological family, regardless of their opinion of what family is. Anonymous donors not being anonymous any more with DNA testing. Overall, to look at donating gametes centring DCP rather than recipient parents.
- Especially now that they can be contacted, support for them around things to think about - but not just 18 years later, over the long term from the point they donated.
- I would like to see clinics and gamete banks share the experiences of DCP with donors. Whether this be a website, book, magazine, leaflet, online conversation etc. I see many UK based clinics posting on social media to attract donors. The money they will receive is always mentioned. It is shocking to see how many people are willing to donate whose sole reason is either for the money or to help someone become a parent. The thought of having a biological child out there and what their experience might be like is never mentioned or perhaps even thought about. They need to change the way they recruit donors and make it less about the money whilst including the possible outcomes of biological children reaching out to them later in life.
- The importance of generic mirroring and that a child will want to connect with the donor family.
- Full education on how anonymous donation effects the mental health of DCP. How to approach DCP contact since it's inevitable nowadays. Making sure they understand how serious it is. Making sure they understand RP and DCP perspectives.
- No anonymous “donors” (read: SELLERS). No money should exchange hands EVER. Gamete sellers should be heavily counseled, full spectrum medical testing, counseling that they are GIVING UP their own child, background checks etc.
- Required counseling and preparation for potential contact. Ensuring that they are open and willing to react positively to future contact. Emphasizing the seriousness and lifelong potential commitment to this, instead of emphasizing the cash reward.
- Screening to see if they are in the right person to be donating. Allowing better interaction between donor and child without this bullshit about being sensitive for the recipient parent. WE are affected, it's OUR genetic history that's disconnected. We have a right to know each other, we have a right to interact and exchange information. Donation does NOT end when they walk out of the clinic after ejaculation. This is a lifetime contribution and their obligation to the child extends waaaay beyond donation. They need to be aware of the impact, the consequences and what they are committing to. What kind of family they have donated to.
- They should make them aware of the possible consequences. Also should do more concerning health history and possible genetic transmitted issues.
- Fully inform them about what awaits them and counseling throughout the whole process.
- They should read about the experiences of DCP to get a clearer idea of what DCP need. They should understand the impact and consequences of what they are doing. They should be told that their biological children may or may not want to have a relationship with them and be prepared to respect and support that decision. Ideally, they should meet the recipient parents as these are the people who will be raising their biological children.
- Help them realize that they are creating a whole person, a whole living breathing thinking person. Also by actually telling them the truth and only using the amount of gametes they say they will. More honesty.
- Accurate information on health risks, what donation results in (YOUR offspring), help discussing with their family so it’s not a surprise when a DCP show up, and resources for what to expect when they do.
- Counseling to understand the impact and severity of what they are doing and warn against anonymity.
- Better education regarding the potential consequences of their donation.
- That there are actual resulting humans who are likely to find you.
- Donors need to be aware that they are creating people. It is likely that their offspring will look for them in the future even if the donation is anonymous. Support to prepare for that possibility and how to handle meeting and communicating with their offspring should be addressed. Resources on how the donor can discuss their donation with their own family would also be beneficial as DC offspring may reach out to family members in their search for their donor.
- Counselling so that they know they can't be fully anonymous any more.
- More information about their responsibilities as a genetic parent, i.e. giving the child/adult any information they ask for how to approach their genetic children.
- No anonymous donation.
- Explaining the dangerous reality of anonymity for DCP (mostly lack of medical records), guidance for how to respond if DCP reach out for information.
- They should not be compensated. it should be impressed upon them that their donation will lead to the existence of a person who will have questions growing up. They should not be promised anonymity.
- Follow up education for when DCP might contact the donor.
- Abolish donor anonymity. Provide health history of gamete donor. Sibling registry. Require pre-donation counseling regarding the needs of a donor conceived person. Restrict the number of offspring per donor. Penalize blatant fertility fraud.
- Explicitly clear understanding of the consequences of their donation (biological children). Long term studies on the impact of egg donation on egg donors.
- More information for egg donors about possible medical complications/long term consequences. Understanding for all donors that DNA testing makes anonymous donation impossible. Counseling on how donor conceived children may feel and react.
- Mandatory open ID and an interview/counseling session where donors are educated that their offspring may view them as a parent. They should be asked what kind of relationship they envision, and if the donor is not willing to be known from birth or at least age 18 (and we're talking a relatively high-quality relationship, not a one-off email exchange), they should be turned away. I would also like to see an end to the exportation of sperm, donors should always live in the same country as their recipients and speak the same first language as their offspring.
- More information regarding the children they’re creating.
- There seems to be a real gulf between donors’ perceptions of donation (they are much more likely to view it as transactional and arms-length) vs DCP. I would like to see them screened explicitly for child-centeredness and rejected if they seem unlikely to welcome contact.
- Meeting adult DCP in person and hearing their stories BEFORE donating. Giving them info that just because someone wants a baby doesn’t mean they will be “good parents” - explain average stats for child abuse and neglect for population sizes, and estimate the number of their bio children that will experience abuse based on sibling group sizes and population estimates so that they can consider the implications of letting their bio child be raised by strangers.
- Extensive counseling is needed to understand they’re creating sentient humans and in these times anonymity is dead.
- My donor needed support in how to tell his family he’d donated. He also died of a form of cancer and before dying tried to reach out to his biological kids through the clinic to warn them, but they didn’t allow it.
- Them being told about the lack of screening for recipients and that their bio children could end up abused and in foster care by making the decision to donate and relinquishing parental rights.
- I wish clinics/banks/the industry warned them of what they are actually doing. They have no idea how this actually affects DCP emotionally and physically. I don’t see it happening because theoretically they would lose donors, but I wish they would open donors’ eyes to the reality of it all instead of telling them they’re “helping a family” etc.
- Donor conceived led education.
- They need to know the seriousness of selling their gametes. How damaging selling anonymously is. How important it is for kids to know where they come from. How they have no right to anonymity.
- Make sure they’re making a fully informed decision, stop recruiting on university campuses, have avenues for donors to meet DCP, keep donors updated on how many times gametes are used.
- Information on how big this decision truly is, counseling perhaps, more open lines of communication.
Please tell us about any support you have received related to your donor conception.
27 of the 51 responders specifically included the word ‘none’ in their reply. Here are the detailed responses:
- Donor conceived community is amazing for peer support.
- Whatever support I wanted.
- I have had opportunities to speak to counsellors at school, should I want to - but otherwise not formally. My mum is available to speak to me about it at any time.
- I have sought my own support via online Facebook groups and Instagram accounts. My mum has always been supportive with my desire to find out information regarding the donor, DNA testing etc.
- When I was 5 or 6 I was sent to the school counselor. I was a little off put because I didn't understand why I was there, it was pointing out my weirdness from everyone else. She asked if there was anything I wanted to talk about on the matter or if I had questions. I asked what I was supposed to say if someone asked where my dad was. She said anything you want to. I think we may have gone over various things I could say if I wanted to. Then I left. That was the only support given to me before I was an adult and got a therapist.
- Good luck finding good support if you’re donor conceived.
- I sought therapy as an adult on my own insurance/dime.
- Rejection and a dance around accessible information from the clinics. Just guilt trips for requesting my mother's and my own files. There is NOTHING to support DCP it's just performative administration and recipient parents speaking on our behalf. We should not be charged for getting support for a situation we had ZERO input in while at least 3 consenting adults have made on our behalf.
- When I joined the UK Donor Conceived Register several years ago, I was given one counselling session. I've found peer support from other DCP online and in person.
- Online support groups. No resources were provided for me.
- It has been an incredibly awful experience full of shame from my family.
- Communication with 30 half siblings.
- I have found my own therapist, fb groups.
- Zero support. The fertility clinic resisted my request for records claiming privacy for my parents. When I got authorization they ultimately told me they had been destroyed. The only support I have received is from donor conceived support groups.
- Donor Conceived Communities peer group and therapy.
- The donor conceived community organization that offered a support group has been the only thing helpful to me so far. That and therapy. There should be training for therapists in working with donor conceived people.
- The main support I’ve received has been through my own therapist as well as online communities: We are Donor Conceived and Donor Conceived Community
- None except a Facebook support group.
- Nothing, the Cleveland Clinic was so mean to me on the phone that I cried for almost 3 days. Even finding a DC-competent therapist was almost impossible.
- Absolutely none. I called the bank where my parents received the donor eggs and they don't even keep records for more than 10 years.
- None other than my own therapy.
- DCC, therapy.
- Online groups.
- None from the fertility industry. I paid for my own therapist and support group. The fertility industry does not care about the harm it causes donor conceived people because we aren’t paying customers. This industry is based on greed and lacks any support system for the unique needs of the people created.
- It’s been a challenge. My marriage has essentially dissolved, my friendships have changed. My siblings are wonderful and my donor wants no contact.
- I had to teach my therapist about donor conception in order to get help about it.
- The support I’ve gotten has been from my parents. I think they were excellent at letting me know how donor conception worked. I think more support from society to be more open and accepting of different family types could be helpful so as not to make donor conceived people feel that there is something not right about them. I don’t think my being donor conceived or donor conception is wrong in any sense.
- None but community support.
- Only from support groups and other DCP. And it makes a world of difference. Other DCP get it in a way that no one else can or does.
- Therapy and community support.
- The only support I've received is from other donor conceived people.
Please specify what support you’d like to see for donor conceived people:
- The ART industry centring DCP, rather than recipient parents or donors. better training for therapists and health care providers.
- I felt well supported.
- Somewhere DCP are aware they can go to confidentially to talk about issues that might arise at different points in their lives.
- Clinics reaching out to DCP when they are adults, providing relevant information. In the UK, the HFEA doing more for donor conceived people - reaching out to donors to inform them they can remove their anonymity if they wish (those who donated pre-2005).
- Peer groups for them to connect with other DCP. Free DSR. Counselling. Help with dealing with genetic bewilderment. FULL MEDICAL HISTORY.
- None in particular.
- An end to anonymity, support in legislation. Desperately need therapists who understand the importance of genetics, family, the DC experience.
- Counseling available and affordable up until adulthood. Only using donors who are willing to have their identity disclosed.
- Support networks. Funding from the clinics and their mega profits directed towards psychologists and psychiatrists to help undo the damage caused by our creation method. This shit is lifelong. Accessible meeting arrangements/contact options and information release. Not reliant on permission from the recipient parents. They have NO RIGHT to make any more decisions on our behalf. Disclosure should 100% be forced - either by the RP or by a trained mental health supporting professional. Money actually needs to be taken from these clinics with their massive profits - shareholders should NOT be a thing for health care services - that money should be getting funnelled back into supporting the products of this corrupt and immoral industry.
- Help finding their biological family and health history. Also, psychological help concerning rejection and judgment of the outside world.
- Counseling to deal with the emotions.
- I think a lot starts with educating recipient parents as they are the ones initially best placed to offer support from birth. Support should not just be a band aid on an unjust system. The system needs to be changed to ensure DCP can know and talk about their origins from birth and be enabled to know and have relationships with their donor and all half siblings. There should be a maximum of 5 births per donor as any more is overwhelming and risks making DCP feel like a product or just another number.
- Literally anything.
- Therapy!! Education/individualized support and resources on typical DCP issues (relationship navigation, feelings, health issues, conversations). And more therapy.
- Therapy licenses or specialties as this is a very unique experience.
- More support groups, political protection, and general education.
- Anything that isn’t from Facebook and me paying for my own therapist.
- Better resources for finding and connecting to half-siblings that don’t involve taking a commercial DNA test. Clinics should keep these records and they should be readily available to DC people along with the donor’s medical history that is regularly updated.
- Counselling and communities.
- Therapy and counselling.
- Openness from the start, opportunity to meet other DC families, general public education about it.
- No anonymous donation. Accurate and updated medical histories. Free DNA testing.
- Advice on how to reach out to biological family, how to talk to others about this issue, how to advocate for change.
- More validation. Less “at least you exist.” Avenues for finding out more about your donor’s and their relatives’ health history. STUDIES of the effect of cryogenic freezing of the parts that came together to make me???
- Genetic evaluation. Counseling.
- Free consumer genetic testing, counseling specific to being donor conceived, coverage for medical genetic testing, tools for managing sibling relationships.
- Counseling for those that have issues.
- Early disclosure of donor conception, identity of gamete donor, genetics, health history, sibling registry, therapy if needed.
- Access to full health history, genetic counseling where appropriate, accurate record keeping, number of donor conceived half siblings.
- Strict regulation of the ART industry, ending anonymous donation, offering counseling and support groups for DCPs starting in childhood if possible.
- Access to donor genetic history, identity of donor.
- I would like there to be a central regulatory body like VARTA that is NOT controlled by the industry, it should be a non-profit or government affiliate. All information about our parentage should be transferred there, and they should manage contact between donors, recipients and offspring. Donation should be known-from-birth, or open ID at minimum, and recipients should be able to request early contact (from birth) with open ID donors.
- An option to learn non-identifying information about our donors and support groups. I'd like the process to be more open and for there to be more push for parents to tell their children that they're donor conceived.
- Full access to CURRENT donor contact info at age 18.
- DCP RIGHTS.
- Access to limited info about donors. My mom no longer has the information she received about my donor. I called the lab to get this information and was told that I could not because it's my mom's medical information and not mine. It is arguably more mine than hers!
- Therapy groups, therapists that specialize in it.
- More groups, more specialized counselors/therapists.
- I would like a single regulator to handle questions and support for DCP. I think 1-3 free sessions with a culturally competent therapist would be helpful, but the main intervention I would like to see are actually marked birth certificates so parents cannot continue lying to their child beyond the age of 18 or so (when the child will see this document).
- Ability to meet their bio family before 18. Frequent medical updates (yearly at minimum), free counseling with an unbiased therapist who has not used a donor themselves. Reunion counseling when they meet siblings and parents for the first time. Free DNA tests. Free support groups with other DCP. Free counseling with their bio parent. Free counseling with their social parent. The fertility industry advocating for accurate birth certificates that list bio parents and legal parents.
- Basic empathy and space to process.
- Education on what it is, its implications, and widespread knowledge about best practices regarding it.
- Free mental health treatment. Access to identifying information about donor parent and siblings.
- I think it would be helpful to get access to medical and health testing once in a while for donor conceived people or anyone else really. I don’t think genetic medical history is super reliable. Just because a genetic parent has a disease, that doesn’t mean it was actually passed down to the genetic child. Furthermore genes express themselves in different ways and change due to environmental factors. I think it would be better to get health and genetic testing for your individual genetics to get more accurate information.
- Free therapy and a societal overhaul on how we’re treated.
- More access to other DCP especially from a young age, to mitigate feelings of otherness and isolation. And no more anonymous or open ID (“anonymous until 18”) donation.
- Therapy from DC competent therapists.
- Access to medical information. Knowing the identity of their bio parent before 18. Passing laws that regulates how many kids can come from one biological parent. Ending anonymous gamete selling.
- Full health information, counseling, avenues to find genetic family, support groups.
- Open lines of communication, less secrecy, more legal policy/guidelines in place to prevent clinics from being able to do whatever they want with no restrictions.
77% (39) have connected with any genetic relatives. We asked how the connection was made:
78% (40) are a member of a donor conception community group that provides support. They named these community groups:
43% (22) people listed the We Are Donor Conceived Facebook group and 22% (11) listed the Donor Conceived Community.
These other groups were also cited: Bipoc, Right to Know, Donor Conceived Alliance, Donor Conceived Australia, Worldwide Donor Conceived, Donor conceived persons of single mothers by choice, Reddit, Donor Conceived Register (FB group), Donor conception best practices on Facebook, Donorconceived subreddit, USDCC, Parents of Donor Conceived Children, Xyconnects.
In what way are these community groups helpful?
- Validating, build solidarity and community, fill gaps in therapy.
- Group counseling and not feeling so alone.
- Sharing stories to feel less alone and talk through our specific struggles and experiences.
- Counselling, providing access to and a community of other DCP to share experiences.
- Validating, knowing I’m not alone.
- Connecting to other people with the same experience.
- Being able to connect with other DCP makes me feel less alone. Having people who get it validates so many of my feelings. I didn’t have this at all growing up and it really helps now.
- Met peers who have navigated the same discovery I have, feeling less alone, good advice sharing and empathy within the groups.
- Connecting with others in similar situations, feeling less alone, processing emotions, guidance from others who’ve been though the journey of connecting with genetic relatives, navigating everything.
- They make me feel like I’m not alone, since society likes to dismiss our feelings.
- They have been immeasurably helpful. I didn't think there was anyone who was like me. I never told anyone my true feelings and I finally was able to. And those people understood what I meant and some even agreed.
- It's been nice to connect emotionally with people who have gone through the same thing as me. They have lots of advice about DNA testing, connecting with relatives, and coping with the process.
- Knowing you're not alone.
- It's amazing and validating to hear other people's stories and to know you are not alone in your reactions and feelings. For many years I felt guilty for my genuine feelings of anger, loss, and curiosity. I was told donor conception wasn't a big deal so I thought I was a bad person for feeling like it was and for wanting to know the donor and my siblings. It changed everything when I found out so many other DCP feel the same as me.
- The best practices group is an advocacy/education group. It is not helpful to me and at times can be hurtful. I stay in it to share my story for RPs. The WADC group is DC people only. It’s full of people of understand the difficult and challenging feelings, experiences we have. All my life growing up I thought I was the only one like this, I had never met anyone DC, finding a group of thousands of us was so emotionally lifting for me.
- Helped me find my siblings. Got to read other stories similar to mine. Helped me feel less alone.
- I can read about other people's experiences and relate to them and also partake in relevant surveys.
- Get to hear other people with similar experiences.
- Mutual understanding
- They make you feel less alone and that your feelings are valid. We understand each other when perhaps family members, friends, other recipients do not understand our views or support our curiosity. It often feels like the voices of DCP are shut down, especially by recipients who refuse to listen to any negative experiences of DCP. We hear and listen to each other in these community groups.
- They’ve given me words for my experience that I wouldn’t otherwise have.
- Meeting other DCP.
- Work as a pressure valve and a means of finding identity within the lack of identity, support within the lack of support. It’s a place to find people who can actually commiserate with you.
- Share similar experiences.
- Sense of community and bouncing ideas/thoughts off each other.
- I get to meet other DC people and donors.
- They help to pass real, actionable legislation.
- Discussions about feelings and hard issues that are normally dismissed by non-DCP. Help with DNA testing and genetic genealogy. Help navigating donor/sibling and parent relationships. Advocacy.
- Validates feelings upon late discovery Shares experiences of dealing with late discovery.
- Other people like me to talk to.
- I’m no longer alone in my feels of disenfranchisement.
- Feeling less uncommon.
- I don’t feel alone and I’ve been able to support others. I’ve also used it to get information and resources, join advocacy efforts, etc.
- Reading other’s experiences has been helpful in framing my own journey.
- Finding community. Relating to others' experiences. Validation. Support. Information. Education.
- They’ve helped me develop a vocabulary and philosophical framework for my own feelings about DC and provided friendship/support.
- They've been a lifeline, I'm pretty sure they're the main reason I'm not dead. I got help crafting my Dear Donor letter, advice on building sib and donor relationships, and the community even with unrelated DC people has been indispensable.
- Able to get updated health info or reach out to half siblings if I want.
What support would you like to see from the ART industry for community groups?
The most common responses were:
- Funding/donations/financial: 13
- Record keeping: 6
- Funding and awareness raising
- Unconditional and uncontrolled funding for support grounds. A compulsory 10-20% MINIMUM contribution annually towards a fund specifically for DCP created networks. FREE DNA testing and genetic health testing (since they're very good at hiding medical history, losing files, pretending the donor doesn't want to make contact etc). DO NOT fund networks formed by recipient parents. They do NOT represent us. They have NO right to speak on our behalf or make a profit off our situation - considering they contributed to the problem because they HAD to have a baby. No. You lost your right to be involved after you messed with nature and intentionally disconnected us from our biological family.
- I would like to see a place to discuss and relate to people.
- Support with DNA testing, tracking down genetic relatives, subsidized counseling and therapy.
- More transparency, more available information for donor conceived people about their donors.
- Promotion and donations $.
- Free therapy programs or grants related to mental health support for DCP trauma.
- Funding, education
- Education, education, education for parents and donors. For donor conceived people: Access to accurate & updated health info, access to biological family and it would be great to have more regulated donations.
- Make appropriate changes to the industry to follow best practices, accurate record keeping, transparency, limiting sibling groups, etc.
- ART industry actually supporting community groups and using them as resources for intended/recipient parents and donors.
- DNA testing support and family connection.
- Funding for groups is necessary to pay for DCP who spend time facilitating these groups and for advertising them so they can be found easily by those who need them. Funding should also be available for counselling for all who need it.
- An effort maybe? Recognition of who we are and what we believe. An apology would be a good start.
- Listen to the community groups and make the changes we are asking for. Support us and listen to us instead of trying to silence us.
- They should be fully transparent and willing to take advice from the people that are mostly affected by their practices, those being donor conceived people.
- I’m honestly not sure they exist in the US, so that would be a good start. Specialized groups (single mom by choice, queer parents, hetero couple parents) would be nice.
- Sharing these groups with recipients - groups that include a mix of parents, DCP and donors so that all experiences can be heard and taken on board before decisions are made during fertility treatment.
- Fully funding them for DCP. Leveraging them to connect with prospective parents so they can hear the real-life impact of donor conception and make informed decisions. Donate to DCP advocacy groups to support DCP interests. Hire DCP to work in ART so that DCP are included in making decisions that will impact their lives.
- Funding for research on the psychological ramifications for those of us created by the industry. Funding the authors amongst us to write and publish essays about their experience. Fund conventions where our voices can be listened to and then actually implement the changes we know would help future individuals.
- I would rather it stop being a case of "one and done" and more of a lifelong connection between the industry and the DCP.
- Financial support for advertising campaigns to encourage anonymous donors to change their anonymity.
- Alliances, transparency, authenticity.
- Directing RPs toward DCP-centred resources in childhood/young adulthood. Acceptance that support groups exist as a direct result of the harm they have caused. Openly accepting and inviting group advocacy efforts.
- Representation of the Donor Conceived on all steering committees to enable improved industry practices.
- Assist with locating donor and mediating meets.
- An end to anonymous donation, encouraging coparenting with known donors, screening for recipients.
- Proactively asking DCPs about their feelings and experiences and changing their policies to respect what they learn. For example, many of us have spoken out against practices like “contests” to win sperm, but the industry ignores or fights back.
- Listen to what DC people are saying to learn from the industry’s past failures and mistakes to do better and be more ethical in the future.
- Acknowledge why we have to have these groups. Admitting to the harm of anonymous gamete selling. Acknowledging our experiences. Passing regulation laws.
- Not really sure what this looks like, but most of us are hungry for in-person community.
- I'm not really sure in this area, I mostly want them to stop destroying our medical records and verify donor health information. Aside from that, I honestly don't want much contact from the industry. One area where they COULD help is by providing grants for genetic (medical) testing for people whose donors can't or won't give an updated family medical history. If I'd known what carrier screening was, I could have prevented my son's death from a DC-related genetic disease in 2020.
- Better record keeping of live births.
So, as you can see, the industry needs to put donor conceived people front and centre of all activity. There needs to be more education and awareness raising of what a donor conceived child might think or feel about their genetics, conception, blood relatives etc. There’s a need for better counselling for donors and recipient parents, both before and after the baby is born. And there is more the industry should and could be doing for donor conceived people.
© Sali Odendaal and Clare McDougall, 2023. All rights reserved.