Of the 5 respondents that were “very satisfied” or “quite satisfied”,  reasons given were that the clinics / banks were very helpful and supportive and provided the necessary answers to questions, or they had at least provided a gender and birthdate update.

 

When we delved into the reasons for the majority that were dissatisfied, three themes emerge:

1. Donors are not adequately supported and often feel “brushed-off” or ignored.
2. Updated medical information is often not passed on or records not updated.
3. Donors are not given information on how many births have resulted from their donations.

 

1.     Donors are not adequately supported and often feel “brushed-off” or ignored.

 

Bearing in mind that 76% of our respondents donated either to help a family or through a sense of community or civic duty, it is concerning that so many feel ignored.

Respondents say:

“I was brushed off and told they wouldn't want to alienate the RPs”

 

“I have been asking for support for many years. The problem was the RPs were known to me, but then reneged on the agreement to have contact with me and to tell the DCP the truth of their genetic background. The clinic spent years placating me and said their hands were tied as there is no way of enforcing the agreement, as a donor I have no rights.[…] I never felt like I was the client - the RPs were, and any support was in the nature of "damage control", rather than a genuine desire to support me.”

 

“I wanted access to the record from our mandatory counselling session about the verbal agreement we had made around contact and the child knowing from a young age - they sent my medical records (which i didn't request) but not the counselling ones (which they said they couldn't find).”

 

“Never wrote back”

 

“I have received no support nor answers from the agency through which I donated several times. I have reached out repeatedly without any helpful/useful response from them.”

 

2.     Updated medical information is often not passed on and records not updated.

 

Even more troubling than donors being ignored is the fact that their updated medical information is not being passed on.  Medical history and the lack thereof is a big issue for the donor conceived community, so an active unwillingness to ensure this information is received by recipient parents and DCP is very worrying.  It is also concerning to hear that, at least in one case, a clinic/bank did not act on the donor's request to change their status to identifiable.

 

Respondents say:

“They refused to give me any information and refused to notify my recipients of my updated medical info.”

 

“I have asked for them to update my records, which are paper files in offsite storage now that they have moved to digital storage. They made it seem like a chore to find my file so I didn't pursue that. I plan to follow up with them to demand that they pull my file and change my status to open/identifiable and to give permission to share my contact information with the families/children. They have been 0 help since my donation.”

 

“I gave them medical updates which I later discovered were not passed on to my recipients.”

 

 

3.     Donors are not given information on how many births have resulted from their donations.

 

Respondents commented:

 

“Verbally told of 8 live births and the year.  Not advised in writing. Not given the donor number/ID. Assume birth mother and social father have determined not to reveal details of conception.”

“They will not tell me anything. They said it was anonymous and they will not help me in any way.  I just want to find out if any of the 27 eggs I donated became humans. I have 30-year-old triplets from the process.”

 

 

Donors think the fertility industry should do more to support donors

The majority (88%) of donors in our survey felt the fertility industry should do more to support donors.  An analysis of suggestions for type of support showed key themes:

 

1. Donors want more support:
   1. before donating to help them fully process the implications of their donations.
   2. to know how to interact with offspring that may contact them.
   3. to understand the experiences of other donors.
2. Donors want to feel respected by RPs and clinics / banks. They want honesty from the clinics and banks and RPs to do what they agreed to do.
3. Donors want clear, updated and accurate information about the number of children born as a result of their donations. They also want to be sure their medical records are being updated and the information passed on.
4. Donors want pathways to connect with recipients or donor conceived children.

 

1.     Donors want more support

 

Much like the recipient parents in our recent survey, donors seemed to go through a mental shift in their attitude to their donation.  They would have liked a fuller understanding of the implications of their donation before making it and in general called for more support.

 

Recipients said:

“Implications as a donor need to be made clear.  Donors need to know the part they can play after contact with offspring.  They need to support the rights of the children they help produce so that those offspring know their biology.  Counselling and support group assistance can work here.”

 

“More info about how to interact if the offspring one day seeks contact.”

 

“More support before/during egg retrieval process. Connections with other donors. I felt a little isolated and knowing some other people going through it would have been nice.”

 

“I’d like to see more resources about the consequences of anonymous donation.”

 

“Clearly articulate the complex nature.”

 

“A minimum of 5 psychologist sessions prior to donation, with psycho education around the types of scenarios that could evolve in the future and how best to mitigate them.”

 

“No anonymity and after care following retrieval, counselling and open communication. Facilitating  contact for at the very least medical history.”

 

“I think that donors need to be shown where to find the perspectives of donor conceived people so they can make a fully informed decision prior to moving forward.”

 

“Structured support groups for millennial and Gen X donors, stories/narratives of former donors and what they’ve experienced as former donors."

 

“Minimum age of 25 years old. Several counseling sessions. I’d say that’s a good place to start.”

 

“More counselling.”

 

“More education before, during, and after donation. Because this is a lifelong journey. It doesn’t end with the donation. These are non-medical consequences of a medical and social decision. They deserve more consideration and support, especially given the imbalance in needs and incentives and knowledge inherent between doctor, fertility patient, gamete donors, etc.”

 

“Much better and fuller informed consent - making sure that donors fully understand the consequences of what they are doing. Offering support and counselling if donors need it - for example when their offspring make contact with them.”

 

2.     Donors want to feel respected by RPs and clinics / banks. 

 

Many of our respondents talked about feeling used and that they were regarded as a nuisance.

 

Respondents said:

“Myself and a lot of the donors that I have spoken to (it took a good few years to find any other donors) have all been treated so disrespectfully by the parents of the DCP and disregarded, lied too and in general, used.”

 

“Laws are needed to ensure RPs uphold their end of agreement.”

 

“I'd like sperm banks to be more inclusive and transparent.”

 

“I was quite unwell for several months after my donation when i would have a period, and there was no clear in-place support for that; I was made to feel like a nuisance. I feel that something should be in place to monitor the wellbeing of donors and to treat any issues that arise from the donation process.”

 

“They [clinics / banks] need to understand the potential issues that arise for all parties involved over the years.”

 

“Emphasizing to parents of DC people that the person providing gametes is NOT "just a donor" who can be dismissed/forgotten. Overall getting beyond treating donors as a source of a key ingredient to donor conception and then abandoning the donors once the clinic has what it needs to satisfy the desire of people to have children.”

 

3.     Donors want clear, updated and accurate information about the number of children born as a result of their donations.  They also want to be sure their medical records are being updated and the information passed on.

 

Donors told us they wanted:

 

“Mandatory follow through from clinics with information about donations and embryos and births, access to medical records, and an agreement minimum of at least 21.”

 

“Making information about the success of donations more readily accessible.”

 

“I believe copies of all records should be automatic.”

 

“More regulation and enforcement of retaining donor medical files in the event of health implications down the road.”

 

 

4.     Donors want pathways to connect with recipients or donor conceived children.

 

Donors wanted clinics and banks to:

 

“Facilitate  contact for at the very least medical history.”

 

“Willingness to be an intermediary to maintain/share information (2 way street) ongoing medical status of donor and donor ID/ number and facilitating communication/contact where willing/open opportunities exist.”

 

“Pathways to connect donors  to recipients/ donor conceived.”

 

It is clear from the answers that many donors do not feel valued and are made to feel like “just a donor”.  

 

The majority of our donor respondents have taken a commercial DNA test

Of our respondents, 73% had taken a commercial DNA test such as 23 and Me, Ancestry, MyHeritage, FamilytreeDNA  or GedMatch, and 66% of them had done so specifically with the intention of being found and to share ancestry.  Some had taken these tests out of an interest in genealogy and being found was not their motivation.

 

Of those that had not taken a test, two hadn’t as they are known donors and others commented:

 

“No, It’s not important to me.” (This person has re-registered as identifiable)

 

“No, I didn’t realise it would connect me to any potential offspring.”

 

“It's never occurred to me but now, I think I will.”

 

 

Whilst it isn’t possible to make generalisations from our survey responses, it was abundantly clear that at least the donors that responded to our survey were open to being found and connecting with children that shared their DNA.

 

When we asked why they had taken commercial DNA tests, donors told us:

 

“23andMe because I wanted to share my health and ancestry with the group of donor recipient mothers who contacted me.”

 

“Yes, both 23&Me and Ancestry DNA.  Knowing how harmful anonymous donations can be to DCP, I want to make myself reachable so I can show up for my DC kiddos in any way that they need me to be.”

 

“I am on all the major platforms and now manage 200 DNA kits on a tree with 150,000 people. There is no way they won’t find me. Seeing others with unknown parentage and people who have genetically mirrored with their relatives and mistaken it for attraction has made this a priority. No one should be in the dark about their ancestry, for basic health reasons.”

 

“It is very important to be transparent.”

 

“Ancestry.  To make myself able to be found if my DC children seek me via that route.”

 

“Wanted to know my own ethnic breakdown as well as put myself out there for anyone looking. Did both Ancestry and 23andMe to cover the bases, as well as MyHeritage.”

 

“RPs started acting off. Went on sites as prevention.”

 

“Ancestry, curious about my heritage plus also wanting visibility when/if DC offspring get curious or are told.”

 

“In order to establish paternity with the first two bio-kids who contacted me and I have made my results on ancestry available to additional bio-kids who may want to contact me.”

 

“I would have anyway as I'm keen on family history.  In addition I've done all I can to facilitate contact.  I'm also on the Government donor register as well as the clinic one.”

 

“To find my donor conceived children.”

 

“Hoping to connect .”

 

“In hopes of connecting if they would like to.”

 

Of course, it’s important to remember that simply being available on commercial databases does not mean that donors will be found, particularly in countries where these sorts of tests are not common place or if the donor conceived person does not know they are donor conceived. It’s also worth noting that whilst all of the respondents to our survey were either known or open to being known, this may not be the case for all donors.  Commercial tests can also have the effect of making donors unintentionally identifiable, for example if a close relative matches with the DCP through a DNA database.

Donors think about their donations frequently

All (100%) our sperm donor respondents think about the fact they were a donor at a minimum of 12 times a year, with the vast majority thinking about it on a daily or weekly basis.

This result is likely because the donors that found our survey are engaged and open to contact, but even so, this does challenge a popular belief that all sperm donors give up their sperm lightly and never give it another thought.

Egg donors in our survey thought about their donations less frequently than the sperm donors, but 65% thought about it at least 12 times a year.   A relatively high percentage (35%) of egg donors reported thinking about their donations rarely or never, whilst two of the three embryo donors in our survey thought about their donations frequently and the other never.  

It is surprising that sperm donors in our study think more about their donations than egg donors, and it may be the reason for this is these particular sperm donors are more engaged in the world of donor conception and are keen to establish links with genetic offspring.  Of course, sperm donors that never give a thought to donations made years ago are unlikely to have come across our survey in the first place and might have little interest in completing it if they had.

 

 

Our take on the survey results

Since our survey sample size was quite small, it is not possible to draw general conclusions.  However, there are some themes that start to emerge, and these are worth further exploration and discussion and all raise questions about regulation and standards.  Six key issues come to mind:

 

1. Family limits need to be made clear and need to be adhered to.

Currently, family limits are often exceeded and there are no limits on, for example, a recipient parent going on to donate embryos. What are the current issues with maintaining family limits? How can this issue be addressed? 

2. Some donors feel differently now to when they donated and no longer wish to remain anonymous.

This is surely a positive trend for donor conceived children. Other than using commercial tests, how can donors change their status with the clinics or banks? Who should ensure that recipient parents or donor conceived people are notified of status changes?  Does this require regulation?

3. There needs to be more support or pathways need to be in place to help donors navigate contact with people conceived via their donations.

Who should provide this - regulators, societies such as ASRM, banks or clinics?

4. Like recipient parents, donors need more information and education on the implications of their donation before donating.

This was a core theme for our survey of recipient parents and it  seems that it would not be an impossible task for clinics and banks to accomplish.  Recipient parents were clear that they wanted more counselling, but even a well-made video could highlight social, psychological and / or parenting implications.

5. Donors need to be kept up to date with information about the numbers and genders of children born through their donations.

This is completely achievable and should be standard practice. How can this become standard practice? How does this relate to the issue of family limits?

6. It is vital that clinics and banks have a process to allow donors to update medical information and this updated info needs to be passed onto RPs and DCPs.

Again, this should be standard practice and a legal obligation. How can we ensure this happens? 

 

Finally,  in conclusion, we are struck by the global nature of donor conception: firstly, when family limits in one country are reached, sperm is exported and secondly, people frequently travel to other countries to undergo treatment or use a gestational surrogate.  Despite the global nature of the issues, each country legislates and makes standards for itself and the interests of the children born as a result are not always central to the standards, regulations or guidance.  One of the biggest destinations for fertility treatment, the USA, still remains completely unregulated.  So, the challenge is this  - how can we address these issues in a globally harmonised way? 

 

 

© Sali Odendaal and Clare McDougall, 2023. All rights reserved.