This Progress Educational Trust event discusses a change that will have consequences for people involved in – and affected by – donor conception. More details in the full description below. ↓↓↓
This event was held online on 27 September 2023, and was produced by the Progress Educational Trust in partnership with the @scottishgovernment. See their websites at https://www.progress.org.uk/ and https://www.gov.scot/
INTRODUCTION
• 0:00:00 – Sarah Norcross (Director, Progress Educational Trust)
PRESENTATIONS
• 0:03:13 – Rachel Cutting (Director of Compliance and Information at the Human Fertilisation and Embryology Authority)
• 0:16:31 – Laura Bridgens (donor-conceived person, and Director of Donor Conceived UK)
• 0:27:57 – Rebekah Dundas (mother of three donor-conceived children)
• 0:40:21 – Nina Barnsley (Director of the Donor Conception Network)
DISCUSSION
• 0:53:15 – Responses to audience questions and comments
This film of the event was made by Video Production Edinburgh. See its website at https://videoproductionedinburgh.co.uk/
Hello and welcome we’re discussing opening the register how to handle disclosure of gamit donor information the hashtag for this event is pet donor and this event has been made possible thanks to the kind support of the Scottish government I’m Sarah Norcross director pet and I’m chairing this discussion now back in the early
Naughties court cases consultations column inches of debate LED orbe it after much prevarication and delay uh to the human fertilization and embryology Authority disclosure of donor information regulations in 2004 and this law abolished donor anonymity going forward in the UK and led to the introduction of what we call
ID identity release egg sperm and embryo donors in the UK and in October 2023 some people who were conceived from donor gamits in the UK were the relevant sperm or eggs were donated after um the UK abolition of donut anonymity came into force will reach the age of
18 and from this point forward a growing number of donor conceived people will be officially entitled to ask the UK’s fertility regulator the human fertilization and embryology Authority the HFA for their donor’s full name their date of birth and their last known address so are we ready after 18 years are we
Prepared everyone that I have spoken to from patients support groups from donor support groups from the regulator to the professional bodies wants this to work well they want it to work well for donor conceived people and their families and also for the donors and their families and many of you will have
Noticed that the HFA launched a campaign um to raise awareness of the changing situation and to encourage donors um to Ure that they’re contactable and this entails the donor providing their upto-date contact details to the clinic where they donated or to the regulator to the HFA themselves and I was really pleased to
See um that the campaign got lots of media coverage one of tonight’s speakers was talking about it on radio 4’s Flagship today program um so let’s hope it has made an impact we have a great panel lined up for you this evening we have Rachel cting Laura bridgin Rebecca Dundas and
Nina Barnsley Rachel is the director of compliance and information at the human fertilization and embryology Authority so just to start with I’m just going to briefly introduce the service that we have at the HFA so it’s focused around the register that we hold so when the HFA came into
Existence in 1991 one of the remits was for us to collect any information about all treatment service all treatments that were conducted in the UK that included IVF cycles and related to this it included all Cycles where donation was involved and it also included collecting information about any live
Births that were through treatment or donation so this means that there are certain people that can access this information from our register so post 1991 that means donor conceived children parents and donors unfortunately the HFA doesn’t have a remit outside of the UK so we can’t provide any information to
Those that have used donation Services outside of the UK or if it’s you’ve had treatment that’s been through on regulated Don donations that means private sperm arrangements or outside of a licensed clinic and also if you conceived by donation pre 199 1 we don’t have the records to do with any of those
Treatments and I know Laura I’m sure Laura will talk about DCR so I’m not going to talk about that at the moment so we have an established service at the HFA called opening the register and you can find more information about that on the HFA website it is an
Established service it first started given information out to donors and parents in 2005 and donor conceived people from 2007 and although we’re excited about 2023 and the change of the law in 2005 we have actually already given out identifiable information about donors to donor conceived people and that’s
Because some donors have chosen before they donated before 2005 to re-register as identifiable information the information that we’ve got on the website explains the process it talks about some of the implic ations people might think about if they’re going to um access information and it also gives information about the support
And the partners that we we would uh focus on on pinpoint to such as DCM which n Nina is going to talk about later on so what information can be got through the HFA so it depends on the age to start with so from the age of
16 um you can find out non identifying information about the donor that’s on the register so at 16 you can find out through the HFA if they donor conceived nonidentified information such as the number um and sex of any half siblings that have been through the born through
Donation also if their donor is anonymous or identifiable as I said you know they’ve got quite a few donors I think there’s over 300 now that have reregistered as identifiable and if they might be related to an intended spouse or partner at 18 now since the law changed in 2005
It means that identifiable information is a been able to give be given out and you can also at this age join the donor sibling link as well so non-identifying information that is available from the age of 16 includes physical characteristics such as um interest occupations hair color eye
Color and it also might say about um any children and the year of birth more recently um donors can provide a PO pen portrait and Goodwill message and that gives a description of themselves and a message the parents and child as an embryologist I was involved in the donor
Program that we had at my clinic and I’ve also done a recent audit of the Goodwill and Pen portrait messages and sometimes it really does make you quite emotional reading them because the messages that donors put in there are are from the heart and really do explain why they want to help create
Families so the identifiable information that we’re now able to give out includes the current and previous names of the donor the date of birth place and Country of birth and the important thing to note in the law it does mean that we have to give out the last known postal
Address and I’ll go on to explain some of the implications around that later on and it also allows the pen portrait and Goodwill message an unredacted cop copy of that if there is any additional information than the um Anonymous information to go out at 18 anybody conceived through
Donor treatment can join the donor sibling link and to do that you make an application through the HFA website we check the register and then we can match siblings together we’ve got over 60 matches at the moment we um they can be just single groups just one siblings or
There can be a multiple group of siblings we also share where people can find support and we also offer what’s called an intermediary service so if you know that you’ve got a donor sibling you might not want to release your identifiable information out straight away you might want to message
Anonymously the sibling a few times to get to know someone before you want to take that step further and that’s something that we offer through the support service at the HFA so 2023 as Sarah said earlier in 2005 this was a huge change a very positive step forward to be able to
Release identifiable information so the first step if you’re thinking of finding information about your donor is to go to the HFA website identifiable information can only at least through going through the HFA there’s a lot of information good information on the HFA website about that about how the process works and
Also about implications to think through if you are thinking about gaining that information for example if your donor doesn’t want to have any contact with you or you can’t find the donor that you thought you were going to be able to have contact with I’ll talk about what
Improvements we’ve made and the this project work that we’ve been doing as well on the website we do sign post to the support services and dcn and other resources where people can find support it’s obviously a a huge thing to do to be able to gain this information and
It’s right that you can talk this through and have support whilst doing it so how it works at the HFA we’ve got a secure online process where you would upload a passport or a driving license ideally pass sport um through something called docky sign so that we can check
The identity of the person applying we then check the register to find where the treatment was and who took place so we can check the donor codes that we’ve got we then because it’s absolutely important to give the correct information out we would go back to the clinic where the treatment took
Place to ask the clinic to check the details we’ve then got a a double checking system in place exactly like you would in a clinic with witnessing so we get two members of staff to double check the information before we provide that information to the applicant and
This is the same process whether it’s a donor parent donor conceived individual there any slight difference in the process when we release donor identifiable information is we still do the same checks but we will notify a donor when we get the first application for identifiable information and we will
Write to the donor to say that we are going to release the identifiable information remind them what that is and also to signpost support services to them 18 years ago is a long time for a lot of us and donors who donated 18 years ago their personal circumstances
May have changed now and they may be in a relationship where they haven’t told their partner that they were perhaps a donor so we want to make sure that there support them for them as well we also in the letter say to donors that the law says that we have to
Release the last known postal address but we know that addresses and writing isn’t always what people want to do um especially if they’re young adults so we ask the Don if they want to provide a email address or a phone number and say if that’s their preferred method of
Contact and we can release this alongside the address to the donor conceived indid individual and say your donor would prefer you to contact them via this and hopefully that way we can make successful connections it has been a priority absolute priority getting ready for 2023
Although as I’ve said we have had a well established service and we have released identifiable information over the several years but we do anticipate an increase an application especially because we are doing the communication strategy and the coms at the moment around this so we do expect to have more donor conceived individuals
Applying parents identifiable donors that we need to contact but what of the things that’s also happened and we have seen this is that people pre2 2005 being made aware of the importance of having identifiable information to pass on to a donor conceived person or re registering as identifiable and then we also have
Increased applications to the donor sibling link so at the start of this year we made three priorities one was looking at the OTR Service as a whole more the operational aspects of the service to make sure that we had the staff and systems in place to be able to deal with
The inquiries that we were getting we also wanted to look at the support service that we offer currently we offer we fund a service through the hu fertility where um they provide counseling sessions but what we wanted to do was look at the different types of support available think of how we can
Make this financially secure in the future and viable but also the different types of support that such as peer support Sarah’s mentioned we’ve launched our who is our donor who is my donor campaign and the communications around this is absolutely critical to raise awareness of how someone can apply for
Information but also to reach out to those donors so that they can contact their Clinic to update their address so in a little bit more detail in the OTR team what we’ve done is we’ve developed internal policies and procedures we’ve increased the number of Staff in the
Team and we’ve also invested in a new it case management service system which makes it a lot more effective and time effective to be able to process the applications we’ve also just recently completed what we call the register tools um many of you on the meeting this evening will
Know that we’ve had a new register called prism and we’ve had to rebuild the jigsaw around that to be able to extract the data from the register and we’re in testing phase at the moment of those and again that will make it a lot more efficient process once we’ve got those in
Place project look at the support services is ongoing we’ve held round tables with key stakeholders to discuss the type of support that might be most beneficial we’ve also done an online survey and looked across International comparators to see what’s being offered and we will report back in November and
January to the HFA Authority members for them to make a decision to where we go in the future of this I just thought I would put a few messages from those that have made applications through the donor through the the OTR system very often they’re very grateful and appreciative
Of how we’ve sensitively handled the process and the information that we do provide to them really does change lives our next uh speaker is Laura bridgin and Laura is a donor conceived person uh she’s director of the newly established organization donor conceived UK and she is co-chair of the donor conceived
Um registers registrant we are in the process of establishing a new peer-led charitable organization to represent donor conceived people donors and others affected by donor conceived practices in the UK I’m also the chair of the donor concedes register and this is the evolution of the community that has
Basically grown around the registrant of the donor conceived register so that’s donor conceived people and donors but being known as the donor conceived register or the DCR um is hindering easy access to the peer support available and we receive and welcome people from any era we have just launched a mini site to
Outline our Ambitions and fundraising intentions as donor conceived UK and you can see the domain along the bottom of the screen there now I am a late Discovery donor conceived adult and I imagine I’ve been asked to speak today due to my lived experience of being donor conceived and
To speak a little about the consult consultation process that we ran at the start of the year the whole concept for donor conceived UK is built around a desire to enable the best possible outcomes for donor conceived people and how the dis closure of gamit information is handled is key to achieving
This in my time today I will cover the significance of 2023 and the disclosure of donor information in the context of The Wider donor conceived Community the most relevant headlines from the consultation and I’ll also outline support need themes for the donor conceived Community now I want to start by stating this fact
For an individual to be applying for identifying information via the hfda they need to know that they are Zer conceived disclosure is not required by law and donor conceiv people whose parents are not signed up to the donor conceived Network ethos of openness and transparency are highly likely to also
Be late Discovery like me a metaanalysis of 2016 concluded that the probability of legal parents in the UK disclosing to their children that they are donor conceived was less than 50% now all this attention on the 2023 cohort must teach us not to lose sight of the retrospective agenda when
Discussing support needs for donor conceived people and historic donors this up on the screen now is the conclusion of Sophie Z’s Recent research what are the support needs of donor conceived individuals who are searching for or open to matching genetic connections she says that the impact of legal and technological changes such as
Direct to Consumer DNA testing and the legal transition to identifiable donation may be felt by donor conceived IND individuals irrespective of year of birth the wishes of donor conceived individuals for different support resources should be borne in Mind by practitioners regulatory bodies and policy makers going forward I’d actually like to pose the
Question how different actually are the cohort of 2023 onwards from the rest of us for example even for this identifiable donor cohort there is no legal obligation to interact with a donor conceived person if they do reach out there’s only been minimal 11th Hour preparation for historical donors
Impacted by the law change but the idea of anonymity is defunct anyway and historical donors of all eras will need support with potential contact and this support needs to be available for life and not just now while there’s all this hike around the 2023 cohorts so I don’t have much time in my
10 minutes to share much here but we did run a consultation at the beginning of this year and the report will be available quite soon on our mini site we intend to build an organization around three pillars of support education and advocacy and we’ll have a strong mental health
Focus we have Ambitions to become a charitable Incorporated organization in 2024 and this will allow us to create a community who wish to become part of the solution for the future support needs of donors donor conceived people and others intergenerationally affected now two of the main themes that
Came out of the consultation process around the subjects of support were to embed this strong mental health presence and also to expand on the support offer available we are hearing that this community needs something systematically different while still recognizing the value of onetoone counseling we have Ambitions through a raft of
Multi-disciplinary tools resources and peer-led events both virtually and in person now how do we intend to be part of the solution it is our ambition to represent the users the donor sibling link the hfba Record Service and the open ID cohort in the same way that we currently
Represent the users of the donor conceed register as the chairs of the donor conceed register registrant panel we want to work with partners and stakeholders to improve online sign posting to ensure UK relevant support and high quality resources are easy to find regardless of your era and by transitioning the home of
This DC Community to its own dedicated organization rather than the same name as a service provider while still retaining links and relationships with that service provider and this will all benefit anyone that is intergenerationally affected it needs to be made as easy as possible for people to find support and
Community from people who have lived experience it can be lonely and isolating when you’re searching for answers for closure for New Beginnings for acceptance and for our experiences and feelings to be validated the good news is that there is an existing active and supportive donor conceived community in the UK which is
Built up around the donor conceived register the community is managed and organized entirely by the co-chairs and other volunteers of the donor conceed register regist panel it will make the community more accessible now it has found a new name and created its own brand identity to distinguish itself from the register and
Its Associated Service as a community we are not the register I wanted to just highlight a couple of the areas of the donor conceived experience um learning your donor conceived often creates a lot of questions without answers which causes strain on mental health and well-being and there’s also an emotional
And ethical labor for donor conceived people having to become nonprofessional intermediaries and Gatekeepers of donor conceived information even if you feel as though being Dona conceived doesn’t affect your identity you are likely to come into contact contact with half siblings or other family members who might and who
May require support to deal with that scenario now there are no donors on the panel to tell you how they feel but I imagine they have similar worries the donors within our community certainly speak of this experience really getting under their skin um on this slide there’s a few more
Um of the areas of AD donor conceived experience and I really feel that some of these can be slightly Rewritten um to describe possible historical donor experience or anybody else um intergenerationally affected for example the psychological distress implications of large sibling groups is as much applicable to a donor’s raised children
As other Don conceiv people and also for historical donors to suddenly be confronted with a a huge amount of Offspring and they ALS Al everybody involved needs help navigating how family Dynamics may change over time or following um a disclosure or Discovery these all feel quite relevant to the the experience as a
Whole so my closing statements are as follows um we really need acknowledgement of the relational entanglement Legacy left by historical donor conception practices donor conception is a lifelong intergenerational process that has far-reaching social implications donor conceived people and those affected by donor conception practices face unique challenges and require support and resources to
Navigate these challenges a peer-led charitable organization can provide understanding empathy information signposting resources and support for these individuals this is not an Us and Them scenario and part of the work that needs to happen is to listen to the worries fears and experiences of the others affected by notion by donations such as
The parents of donors siblings of donors raised children of donors grandchildren of donors spouses of donors and non-biological parents involved etc etc but there is an emphasis on the donor holding the key to the answers we seek as Dona conceed people and the work we hope to do as donor conceived UK will
Aim to enable the best possible outcome for donor conceived people next this evening we have Rebecca Dundas and Rebecca is mother of three donor conceived children and she’s a former member of the human fertilization and embryology Authority um some really interesting presentation so far so as Sarah mentioned I’m adding to that from
The perspective of a parent of a DC teenagers so love not blood so starts the introduction of my 15-year-old daughter Mary’s school essay on family relationships and bonds where she’s trying to explain what it means for a DC young person and family relationships for many young people turning 18 from
October opening the register may be part of their understanding of their family and where their blood relationships to their donor fits into this picture my three teenagers were conceived at a clinic in Scotland with an anonymous donor but will come of age at a time when their DC peers can apply
To open the register and find out more about their donor this talk is about our family and our lived experience as parents with also some input from our teenagers Matthew Mari and Angus and I appreciate the opportunity to include the parents voice and the teenage perspective in this discussion and what
Is probably a niche angle of anonymous donors who are turning 18 at this time when others can open the register our family was conceed under the transitional Arrangements that were included when anonymity was removed in 2005 this made a lot of sense at the time when there were real patients going
Through treatment using donor gametes and there was an acute shortage of donor eggs and sperm to use in this treatment the HFA allowed a year up to March 2006 for the transitional arrangements and I went through an IVF cycle in 2005 where where the embryos were frozen for later use under the transitional
Arrangements we were able to use these Frozen embryos for my oldest son Matthew who was born in 2006 and is 17 in a few weeks and for our twins Mari and Angus who were born in 2008 and are 15 donor treatment was never really our first choice for having in a family but
It was our only option to have a child who would be related to one of us working through the fertility Journey was challenging like for so many and took an extraordinary length of time and big decisions that we didn’t take lightly one of the positive steps was Finding support groups including dcn and
Inuk who guided us through difficult times both before and after having children from an early stage when considering using donated gits we were clear that we would be open about this because we knew if we were fortunate enough to have a child we wanted to bring them up with the truth and
Openness even if it was never going to be a complete picture the consideration of whether to use anonymous donor sperm or not and the implications of it when any child turned 18 was not really a consideration as there were no will to be known donors available at the clinic
That we had been using for many years in Scotland my embryologist set it out for us that there was one donor that was working and one donor that was not working and that was the choice and that was the end of the story and the extent of the discussion about choice of
Donors we were fortunate to have one super batch of embryos and all three of our children came from these Frost ities they’ve been brought up with the dcn book my story from their very early days we helped run a few dcn support group meetings in Scotland so they’ve
Had the benefit of meeting other children who were Doner conceived and heard about egg and sperm and double donation from an early age and they also have friends who are adopted and family member who is fostered a teenager so the understand a bit about the complexity of relationships a dcn conference in
Scotland included a workshop that our kids could go to so they learned how to talk about their family and this has proved helpful over the years explaining that they have a dad but they’re not genetically related to him they have not asked to open the register to see what information the hfo
Holds about their donor we’ve been upfront that it’s very unlikely that there will be anything beyond basic non-identifying characteristics at the clinic we were given six facts about the donor their height build hair and eye color blood group and that the sperm came from crias in Denmark sadly the information in the HFA
Register is unlikely to include anything personal about the donor about why they donated or a Goodwill message for any people created I can clearly see that this if done well could be something powerful and important for donor conceived people when they come to open the register for our donor the register
Might also hold their date of birth ethnicity and if they had children at the time of donation given that the donor is most likely to be Danish we think it’s un likely that they would have known about the potential to re-register or that the current campaigns will reach
Them as a parent we’ve tried very carefully to manage the expectations of our teenagers about what information could be there if they apply to the HFA to open the register as we would hate them to build a narrative in their minds about what they could find out about
Their donor only need to be disappointed when they actually come to open the register any discussions we’ve had so far about opening the register have been relatively short with my youngest son Angus thinking that one day he might ask the HFA about the donor but it’s way
Down his list of interesting things to do um he’s a golf addict who’s also into other sports as well so time is better spent doing those things at at the moment Mary has said that she might ask if she was considering a long-term relationship and she knew that the other
Person was do or conceived and she might ask Thea if they were DC so that she would know she wasn’t going to be um related to them and that would be her interest in opening the register it would be about the relationship side if anything it might be the potential for donor conceived
Genetically related half siblings that triggers their interest as we come from a very small family they only have one cousin at the moment there is the potential that up to 10 families use the same donor so there could be half siblings and the HFA register could hold some of their
Details including number age and sex of these genetically related half donor siblings of course we’re also very aware that commercially available DNA testing could be an option for our young people at a later stage and they’ve got friends who’ve used that so are quite conversent in
That what I don’t know is if the information in the HFA register would have a full picture of any potential donut half siblings since the sperm came from crias in Denmark which possibly adds another layer in that some of these half siblings could live in the UK and potentially other countries as
Well however for our young people at this age and Stage their friends are currently more important to them than putting time into investigating others who might have used the same donor when Matthew turns 18 it may be possible that he wants to do more to find out about donor sibling
Link or do Google searches to see the advice that all young people who turn 18 after 2005 can find out about their donor when they’re 18 that might lead them to doubt what we’ve been telling them and like with so many things and as the the constant teenage refrain goes assume that his
Parents we know nothing we fully understand the interest in the donor and the register is likely to change over time at different ages and stages and particularly if they have children of their own and think more about what being a parent involves and the impact to genetic Roots The
Challenge will come if one of our three develops a strong interest that they want to open the register and the others are not interested this is clearly shared information and in an ideal world it would be informed consensual agreement to take this next step as a parent I know at the moment that
Consensus isn’t really in the teenager’s vocabulary but perhaps in the future that might be the case I do find it reassuring that there is support available to them if and when they decide to access the register as even if they find some information about their donor it’ll potentially make them
Seem more real but as they’re Anonymous still Out Of Reach and there are clearly implications because of that I believe that support for all involved in the donation process from the donor to those who go through treatment to parents of donor conceived children is really important for young
People and young adults the support needs to reflect the age and Stage that they are at and is based in my opinion on openness transparency and advice at their different trans transition points at the moment our young people are confident acknowledging that they donor conceived understand that they have an
Anonymous donor and that they are unlikely to know much about this generous person who gave them a gift of Life as a family we discuss our links and relationships and I hope share the values of respecting our shared Heritage and stories however as Mary is trying to puzzle out in her essay family
Relationships and bonds are often complex and the inclusion of donor and donor half siblings clearly adds to this complexity but we hope that a culture of openness and early conversations has helped her to come to a place where she’s comfortable at this age and stage with these discussions and that she’ll
Be supported in future decisions about whether to open the register undertake DNA testing or join donor simpling link or other future registers our final speaker this evening is Nina Barnsley Nina is is director of the donor conception Network she’s got many many years of experience now in this area um
And she’s also a member of the human fertilization and embryology authorities legislative reform Advisory Group so as Laura said when the law changed in the UK in 2005 um there was a sort of underlying assumption that uh people were going to tell their children because what was the point of making
Donors identifiable at 18 if those children didn’t know that they had an ident had were donor conceived and had an identifiable donor so I think it was a very positive move and it built on the the the history of the donor conception networks’s work on trying to promote openness and uh
Being able to talk about these issues more comfortably with children and with the wider wider Network um we’ve always championed openness more on the basis of honesty being a good foundation for family life rather than needing the law change or it relying on the fact that donors are identifiable but I would also
Say that as well I don’t know whether Rebecca really really cap captured it but because I think she’s you know clearly very comfortable and maybe that’s taken a lot of work I don’t know um but for most people it’s not easy to talk about this and people do need support in being open
And they need resources and that’s partly where we come in um it isn’t always easy and there are much bigger implications for being open if you’re going to start talking about these issues then other issues come up um some of which have been described so I think the way we’d see it
At DC network is that no one is an island uh that children are not independent of their families and their parents they sit within their families and within the wider Community we would see that parents are the decision makers here so they’re the ones that decide uh what donor to use
Where to have treatment what uh what legal framework they’re going to be working under um when to tell and how to tell so they’re making all of those decisions on behalf of their children I’d also say that within the home they’re the conversation leaders they’re the ones that set the tone around what
Can be discussed uh how comfortable people can feel in talking about is issues that are that are challenging maybe and children will sense where the parents are comfortable what’s taboo what’s okay what’s not okay and so we tend to put quite a lot of emphasis on parents and we place responsibility on
Their shoulders for creating that climate of openness that space in the family where these kind of issues can be talked about and support can be be started from the family unit rather than necessarily from professionals or even support outside of the family what we’re aiming for is a
Climate of openness rather than a sort of moment of telling so telling rather than it being a a single event there is I guess that first moment when you tell but then actually what you’re doing is you’re starting a conversation and you’re recognizing that that conversation is going to change with
Your child as the child grows up and the donor has a similar sort of version of that story they also need to be open they need to be talking with their family uh and certainly telling their children and any any other members close family members that might need to
Know so reflecting some of what uh what Laura was talking about I think although we do see that this is a significant moment 2023 coincides with our 30th Anniversary which is rather nice um but I think we would see that whatever the framework people have conceived under and whatever processes and and Protocols
Are available to them that the key issue is that people need to know I think the other uh way that I’ve tried to think about this is to think about the the the process that people go through and I think I’ve tried to break it down there sort of five five stages
Five Stepping Stones so in terms of disclosure so the first thing is that people need to know if they’re donor conceived so that’s just a fact the second thing is that there might be some details about the donor or information about uh about whether half siblings have also been created and so
That’s just kind of a second step in terms of information that’s available and how that might be disclosed so the timing of that might be different um what information you people parents bring in when might vary in vary over time and might depend on how confident
The parents are but also how the tone of the conversation’s going the Curiosity of the child then you might hit a point as we’ve hit now where actually there is another another stepping stone so children turning 18 becoming adults suddenly get access to further information and they can have more
Information disclosed about either the donor or half siblings and of course some other children will have that perhaps blocked or they might that might come at a different stage because it’s possible that those connections may have be been made through DNA testing or some other route prior to the child turning
18 so that’s the kind of contact information more information becoming available then from that there’s a decision on what to do with that information are connections going to be made children going to reach out to either their donor or the half siblings and is that going to be a reaching out
Just on in a quite a distant way is it just asking for information or is actually the intention or the wish to meet up and have some kind of actual inperson event and then from that is the question around building relationship so who are these people and um there might
Be a stepping stone where actually what might be called really meaningful relationships form and these become uh become something new new in the family and new in the person’s life so it’s not necessarily that all of those steps would complete you know not it’s not that’s not the direction of travel and
The objective but all those steps they lead from one to the other and they all might be relevant in terms of how disclosure is made and how people feel about about that information what they want to do with it so I think through the whole of that process through all of those stepping
Zones we’ve got a balancing act of between the information that’s available and shared and when and how that’s done the interest levels and whether children actually uh expressing any interest at all lots of interest and then the importance that they’re that they’re placing on this information and that is
Is partly tied in with the what when and how of disclosure so how they’ve been talked about how this issue has been talked about in the family when it’s been ra raised and uh what information is actually available to give them as we’ve seen you know curiosity levels
Really vary uh so Rebecca was talking about her children not bad interested certainly not at the moment that may change um whereas I suspect that a lot of the people that Laura speaks to and certainly lot of the people that we’ve spoken to at the network are very
Curious um and we also recognize that um once that yeah hope in a way in a way we hope that teenagers have got more interesting in more important things in their lives than immediately reaching out to the hfba to get information about their donor um but we certainly
Recognize that there are other points when it becomes it can become really pertinent so if there are health issues medical issues having children of your own having relationships as as Rebecca was saying just being being cautious around that um I think we’d also recognize that you as as has been
Mentioned really that individuals have kind of very different feelings about this and it’s important to recognize that and try and create a space so we’re trying to create a space where whatever people feel there’s a place for them to go and there are people that they can
Share that with and included in that will be people where they are um having to make connections outside of this legal framework so not just within the hfa’s uh channels but perhaps using alternative routs and the whole thing I think somebody already in in in one of their presentations said managing
Expectations I mean that is a huge part of this it’s what people want and what the reality actually transpires to be and those two things don’t always marry up sometimes in a positive way sometimes in a neutral way sometimes in a negative way so just to give some other scenarios
To flesh out uh what we’ve heard this evening um I should say I think we we see a lot of people who had not planned to tell whether they told the clinic that or not I don’t know but they hadn’t planned to tell and they come to us
Later on because they do want to tell and this also signifies that there’s there is this transformation things can change uh and and we always think it’s it’s a very positive mood move when parents come to us having changed their mind whatever age their children are because then they’re leading that
Conversation in the way that I was trying to describe at the beginning that the responsibil is on the parents that the that the we’re looking at this in the context of a family rather than an individual on their own um so we’ve got lots and lots of support available to
People who are planning to tell a bit later than than what might be ideal right the way up to parents of children I call them children but children who are in their 40s um we’ve also got s lots of different situations like Rebecca’s perfect example there they three children all
Conceived with the same donor uh what happens if one of them decides that they want to pursue the information and one of them is really an adamantly anti- that how do you navigate that we have other families where theyve where they’ve had to had to address that issue
And and I think there can be a lot of confliction around um their around a curiosity uh so children might feel curious or don’t exceed people might feel curious um they don’t want to perhaps upset their parents so they don’t want to express that Curiosity they don’t want to upset the family
Perhaps they don’t want to in intrude in the donor’s family they don’t know what they’re going to they’re going to meet meet up with when they reach out to this donor who is this person what’s the context of their life similarly with half siblings so there can be lots of
Lots of um uh mixed feelings around this and what we need is places where people can go bring those complex scenarios complex feelings and explore them in more detail to work out what the next step on that stepping stone uh should be and finally there are so many people
Involved in this it does get complicated um we had a had contact with a with a the mother of a sperm donor um so this would be effectively the biological grandparents of the children that he’d helped create she knew there were children created he’ contact he’
Confirmed that he had he and his wife had no interest in pursuing any information and didn’t intend to to um to to make any contact UM ideally but the but his mother was very curious really wanted to reach out and find these children and of course that is not
You know there’s a there’s a I think that’s probably reflects some of what Sarah was talking about by my complicated network of people that might be interested in that these children are connected with so just to sort of you know clarify that this is a there is complexity
Here so to finish up I think we really looking at foundations and Scaffolding so what we want is we want different models of support to build Really Good Foundations um we want uh climate of openness that’s the starting point we need good information to be really easily available and we want people to
Be making informed decisions so that’s the parents because they are the first decision makers in all of this and I suppose the donors in in their context and around that we want some scaffolding of really good support Networks professional support where needed so that actually those parents can be
Really confident in what they’re doing that may take time to build that confidence but from that confidence will come confident families and with any luck those children will therefore end up being secure in who they are regardless of whether they pursue information or not regardless of whether
They have access to information or not that the that the um that that um supportive warm umbrella of the family will be very protective whatever life throws at them um I think we want to make sure that uh there is an easy access to information and the appropriate support peer support
Available probably people who’ve been through similar experiences so that they can share they can listen they can guide take care of each other where needed but all of that under this umbrella of a wider family unit and just to really reiterate that we at DC network but we
Think it’s wider than that um want to really be there for All Families um engaging in this process regardless of what kind of donor they’ve used what what um area they’ve conceived in and uh what their particular situation and circumstances it’s really important to be there for everybody what is the
Anticipated response time that the HFA have for any donor conceived people who do decide to ask for identifying information from October onwards it’s been suggested in some circles that it’s going to be 8 months plus which I’m sure if this is correct many people um who would consider this an unacceptable
Period of time for a young person to wait so um Rachel is is the rumor will got this right or are they wrong as usual during coid we had to suspend the service of opening the register because it part of the process is going back to clinics to check the information and
Staff weren’t in clinics clinics were closed so we ended up having a backlog and a waiting list for um anybody applying for information which um does still stand at the moment so there are longer waiting times than we would like at the moment but what we’ve done is
Invested in the new support system in the new case management system invested in new staff and increased the number of staff that we’ve got in the team so there will be we are working through that backlog and it will get better in the future but it’s not something that
Can be provided straight away because of this checking process that we do have so once we receive an application we do give the clinic 28 days to find the information and come back to us and then we do the second checkin and we’re also obviously writing to a donor as well so
It’s not something that we release immediately um and we are aware that there is a waiting list but we are doing everything we can to bring that down implications counseling is phenomenally in helpful and I think the starting point for it is the openness and transparency and sharing good resources
Like what the donor conception Network um and other support groups have so that really was something that that was phenomenally helpful for us and we were able to share it with other family members as well because as Laura and also Nina have um touched on there’s so
Many others in this complex family web that are involved whether it’s grandparents um the non um genetically linked grandparent to our children had some concerns and we were able to share dcn leaflets with them and use as a route for talking through this complex um situation that that we were in and
What it meant for them for not being genetically related to their grandchildren so openness transparency lots of advice and that advice being different at different ages and stages the transition points that I mentioned in my presentation the implications counseling process is not a gatekeeping exercise where they have to say the
Right things to get you to tick the right boxes so that they’re allowed to pursue their option for having a baby and we know that some people feel like that um so I think that would be a really good message that the that the that the clinic could get out there it’s
Not a it’s not that gatekeeping exercise um um and I think the other thing is to take the pressure off the off the the the counselors to some degree you know they often only get an hour or maybe a few hours with a patient to go through a
Huge amount of of um of information and thinking um and to just remember that there is an organ well there are other places not just DC network but with DC Networks great place to go we can pick up some of that conversation that that conversation can continue over time you
Don’t have to get it all done in that one hour session with that patient um because I think that that can be just such a huge pressure we know Emily Engel has a problem which was touched on I think um by both Rebecca and then by Nina about and Emily asked what plans
Are there to protect or not under 18s whose older siblings or half siblings are obtaining their donor information because that’s a sort of invidious position the HFA can’t do anything about the fact you’ve got a you’re 18 or 19 and you’ve got a 16y old sibling um so
So what um what if anything can be done about that um perhaps we’ll go to Rachel first to explain the situation from the regulator’s point of view and then we’ll come into Nina and Rebecca yeah I mean from a regulator’s point of view we uphold the law we don’t
Write the law we uphold the law and um we’re obviously able from the age of 18 and not everybody will choose to apply for their information um but at 18 from that point they can apply and we won’t be able to prevent anybody from getting that information if they’ve got a
Younger sibling what we would do is obviously signpost to support services and to Nina and Laura and other organizations to help the family cope with that but there are also many other ways that you can find out inadvertently that you are donor conceived and one of those is you know the DNA testing
Websites at the moment so children may be finding out a lot younger anyway at the moment I don’t think anything can be done to stop it happening uh I mean we would always I think go back to it being important that parents are involved in these conversations and are helping
Support their children with those decisions and and with any with information that comes along all doesn’t come um so that that that as a starting point so within the family there’s there’s a topic is being talked about and if there are challenges and issues that come up that it starts off in the
Family and then of course yes if they need additional support if if you actually need a space to think it through what should we do in this difficult circumstance where our 18-year-old wants to pursue information our 14-year-old doesn’t and is going to be you know if the 18-year-old goes for
It then the 14-year-old will be exposed to that information whether they like it or not to have a space to go to think through those issues could it be delayed do we need do you need a bit more support is there a way that there might
Be lots of lots of um of of ways of navigating that but um I think it is it’s a case of there there isn’t a way around it there’s no no way to avoid it I suppose is my my my comment and I guess Rebecca that as a parent you’d
Say there isn’t really a way to avoid it I just thought you might like to add something in here no it is one of these potential conflict points that there is different rights and responsibilities there and sometimes individuals rights and responsibilities are confli conflicting at different ages and stages
And with a a family it’s one of the additional things that becomes complex and challenging and ideally try and work through with communication and it’s absolutely right young people are accessing DNA testing Mary was sharing with me over the last week that her friends got DNA testing
Kids for Christmas and were doing them and it seems that it’s sort of a bit of a fad for 15 year olds in this area to do DNA testing it’s sort of like wow the implications of that are are really quite significant um but that’s what young
People have access to from what I know about the community this is quite common that within family units different elements are disclosed um there are a lot of Secrets still going on so it’s not unusual for people to find their donor and not tell their parents It’s
Not Unusual for um historical donors to meet up with donor conceived people and not tell their raised children or wives this all happens this is all people that were there on Saturday you know lots of people there are people that have come with their donors and their parents had
No idea they’d even found them um and yes there are families where s some siblings are bothered and some are not um yeah so it is it’s you know something that even when people are in their 40s and um the donors are older it’s it’s definitely just one of those
Things it’s part of the donor conceived experience for sure that complexity within family so for the next question I’m going to go to Haley from one one from Haley king um and she says um with the potential um for rise in donors coming forward in the coming years possibly
Seeking support and resources um it are there any plans to increase Provisions uh for these donors bearing in mind the limited capability of the existing DCR funding and framework I find um the whole um concept the donor conceived register quite confusing and I’m the co-chair so
Obviously it was set up for pre- 91 donor conceived people and historical donors to voluntarily put themselves on a DNA register and then there’s Associated counseling along with that but the counseling service is the same counseling service that anybody who is Doner conceived from any era can apply to have counseling
With um but it’s still under the DCR umbrella so yeah there’s a little bit of Disconnect over what things are called and and who’s um you know eligible to apply for what um for example I heard that you could be on the donor conceived register um if you were born up to the
Year 2000 so that’s obviously you know something that isn’t really in the original idea with the donor conceed register which was very much for pre 91 so it’s something that I think the whole provision really needs shaking up and like I said in my presentation shouldn’t be this hard to
Find the support that you need um so yeah there’s definitely something needs to happen with the sign posting and um and the framework that makes it less confusing um where the money comes from I have no idea um we’re obviously going to trying to raise some funds ourselves um we have
No money um so yeah we’re right at the beginning of that Journey um we’re just trying with some imperfect action to um make ourselves heard really it’s obviously very much on our radar we know that our families are looking for that support and people are contacting us and
Joining the network um looking for that kind of support so we’re putting something in we’re doing our best to put something into place we’re also looking for funding and it’s not quite clear where we’re going to get it from but we’re determined currently it’s the HFA that funds the support services and
We’re a small organization and we’ve had to find this within our budget to do that and what we are doing at the moment is looking how that we can make that service financially viable for us it is difficult to see how many people may want that support service in the future
Which is why we’ve sort of extended and done roundtables and done a survey which we’re just evaluating at the moment um one of the key things that came from the round tables was the need for peer support and it wasn’t just about having Counseling and as Laura says it’s about
Having somewhere that signposts to good information and where that peer support can be met so we are going back to the authority in November and January with some plans to discuss with them and to make some decisions about where we go in the future with that I was wondering
What will happen when the donor has moved in the meantime and will not receive your mail your mail will be received by the new homeowner in the Netherlands there’s um a National Institution where all updated addresses can be found for example um that sounds like a marvelous system I’m I’m not
Aware of anything like that in the UK um but it’s a question for you really Rachel to think about this we need to go back to how the law was written in 2005 and that was that the last known postal address will be provided by the donor so
If you look at the information that was provided to donors at the time it was that this is the information will be given out your last known address that’s with the clinic or with the register and this was the donor’s responsibility to update that with the clinic or the hfia
If the clinic was shut so the donor hasn’t concentered to being traced and finding new addresses in the I suppose in the um in the UK we do have like the NHS patient system where you can go in and find information but donors confidentiality and protecting the use
Of donor not breaching gdpr is very important um we debated this very lengthly at the authority earlier this year and if anybody does want to read the full paper it really does go into a lot of detail to say why we almost Anon um unanimously agreed that we couldn’t
Go and Trace donor addresses through any third party systems because we would be breaching how they consented at the time we’d be breaching their GDP and um potentially whoever is using that system to find the donor could actually be breaching and letting them know person through the search engine
That they are a donor and that’s the reason why so um I would encourage if anybody wants to look at that further and understand the reasons behind it to all our Authority papers are on the HFA website um and have a read through the legal advice
That we were given at the time since the launch of the campaign um have there has there been an increase in donors revoking the donation we haven’t had anybody saying that any donors have revoked their consent but we have had inquiries through the um from pre 2005
Donors that are wanted to learn more about um becoming identifiable which I think is a really positive way the clinics a response to the campaign donors will be updated through clinics um it’ll be interesting to touch base with some clinics whove recruited many donors to see if that has happened and
We can certainly evaluate the success of the campaign Midway through to see how that’s going I’ve spoken to several donor persons who found out that their open identity donor had died or that he doesn’t want to be contacted some of them want to contact the donor’s children their genetic half siblings to
Gain information about their genetic origin um have you come across such wishes and how do you support um and advise these individuals well we have a we have a a group of qu quite a large number of donor conceived people who are who are connected with with us but we
Often also collaborate with the DCR as was Laura’s organization as is to um try and connect them with other other people who have had a similar experience you know it’s hard to know what else to say we can’t obviously Force those donors to um to be interested in contact if they
Really aren’t um I mean I think it all it does to me is it Flags the importance of counseling donors when they are donating and making sure that they’re really aware because obviously these are pre these individuals are clearly you know from from way back before um before
The law change but that we we know that some clinics are not giving donors proper counseling sessions to help them think through the implications of what they’re doing and this is a sort of scenario we really want to avoid um but yeah I think it’s it’s it’s a sad a sad
Situation as Nina says it’s it’s a really sad situation and very real for many Don conceive people um it’s hard you know it’s a really hard um situation to find yourself in and you know people have diff people have positive outcomes people have some really sad stories connected to the Dona
Conceived um stories but um the one thing that we can guarantee is that there are other people within the UK community that understand what you’re going through um because it is felt that by The Wider public it’s not always quite understood um so yeah the it just
Needs I’d hate to think these people are suffering Alone um because you know our Facebook group and our community is so good at looking after other people in a similar situation that it’s just ensuring they know that we’re here should clinics provide counseling support to the parents of donor
Conceived people uh former Pat patients whilst their children are accessing information about their donor um SL genetic of siblings it’s it’s a tricky one because um I’m aware from a conversation I had with Nina the other day that actually um you know a clinic doesn’t there’s not a lot of money
Generated from the use of donor gametes so it’s um it’s it’s very unlikely that something like that would happen um especially so far down the line but I do think that there needs to be some kind of framework um some kind of permanent organization um that’s there to you know
We’ve the trouble is we’ve got Dona conception Network and and what we’re kind trying to bring into the sphere but we’re charitable you know we we’re relying on funding the whole time so it’s It’s Tricky but um yeah the resources need to be there whether it’s counseling support from the clinics I’m
Not sure if they’re best placed um I went to an event last year and none of the clinic staff there had even met the Dona conceived person so um yeah I think possibly Dona conceived people might be better place to navigate people through that land Clinic stuff I’m not sure the
Clinic where you went along to have treatment would be the right place or would have that skill set to do it it’s more peer-to-peer survivors of other parents who’ve been through it at these different transition points and sharing that lived experience could actually be more helpful than a counselor who
Primarily is speaking to parents at that point where they’re looking to go through treatment not dealing with the real life person at 18 who’s got different choices and decisions to make clinics do have an obligation to provide counseling before during and after treatment it does say in the code of
Practice that there is a requirement to provide that after treatment so if a parent did come along um several years later maybe they wanted to have support in telling the child that they were donor conceived or if it was to do with a child accessing information then a
Clinic should be able to provide support to them um I’m sure that’s something that um beer have spoken about what supportal counseling services are available um or being organized for donors and donor donors families yeah I mean we do the support service and we do offer um a support service for any
Donors that um have either having identifiable information released or are considering re-registering as identifiable but as we’ve said you know the HFA is a small organization with limited resources um so it’s impossible to provide counseling to to everybody that’s involved what we do find that what we spoke about earlier is the
Signposting to other support and peer support organizations like you know dcn and DCR there isn’t a an organization that is primarily focused on donors at the moment yes as Rachel says it’s basically D dcn and Laura’s a new organization that is is providing some some level of support but if we’re not
Focused on donors and um yeah it’s not ideal we have always had donors in the community um so that’s not unusual to you know we have experience of matching buying up donors with other donors to be able to sort of share that lived experience what age would you recommend
Telling a child they were conceived bya donor my consultant for IUI said age three is the recommended age um are there support reporting materials EG age appropriate books we got a copy of my story the dcn book for each of the children and to make it easier for us as
Parents we started reading the stories when they were Babes in Arms and couldn’t really chat back at the time so it helped us to practice using the words and the terms and for the three of our children they say they never knew anything other than these books were
Around and then later books that were age appropriate for them at different ages and stages it just became the norm and nothing special and you know I’ve shared with Nina and others before that each of the children believed that it was a bespoke book for their family so
They’re really well done they believe that their parents are in the pictures and their picture of them made it their unique book so that takes some of the stress out of it both for the parents and you know by implications for the young person so do it as soon as you’re
Comfortable with there isn’t a magic age I don’t think I mean we would say for for Rebecca’s reasoning that we want children to never know not never remember a time they didn’t know um and so that means really telling them before they’re about six but that could be
Starting when they are little babies um it could be starting when they two when they’re four when parents feel ready uh and it’s more at that stage it’s more about the parents getting comfortable with the language and to share that story find a vocabulary that works for
You um at a point where the child’s not going to ask too many questions because what you don’t want is to sit down with an eight-year-old or a 10-year-old and then suddenly get into a whole discussion there the first the first conversation that you have so we’re
Trying to avoid that scenario and try and do it earlier um as a as a kind of make it easier for parents actually but but come to us we’ve got all the resources we got workshops books support groups everything would someone conceived outside of the UK by a foreign
Sperm bank such as crias or um European sperm bank be allowed to check with the HFA if they have half siblings in the UK because they wouldn’t be on the register we wouldn’t be able to check the details and the donor code so no they wouldn’t
Be able to apply to the HFA when sperm from cryos has been used there can be potentially great numbers of half siblings in many countries as cryos exports sperm worldwide we are a UK regulator and we have absolutely no jurisdiction outside of the UK so we can
Only regulate what happens within the in the UK So currently we have a 10 family limit for any sperm that’s been imported to be used within the UK but it can be used multiple times on donor all over the world we can’t have any we’ve got no
Regulatory Powers over that at all so it’s important for clinics to discuss this with any patients that are choosing to use sperm from overseas so they really understand the implications this is one implications counseling as we’ve mentioned is so important to think through what the implications for any
Child if they have got hundreds of half siblings all over the world so it’s something that we are aware of and we want to make sure the right information is given to patients per since burn from outside the UK but it’s not something as a regulator that we can can stop or
Prevent some banks do have restricted numbers of families that they’re using a donor for and that’s something to definitely discuss with your clinic and when you’re selecting a donor really think carefully about can um DC siblings only make connections with other DC siblings who’ve contacted the HFA sibling register or is every everyone
Who is DC listed on that register no it is only people that apply to go on the donor sibling link that then will be able to find out their siblings so it may be that somebody knows that their donor conceived finds out information but decides not to go on
The donor sibling link as a donor embryo conceived person I was very pleased to hear about the um who is your donor campaign raising awareness of a new cohort of donor conceived people being able to find their donors as I’m in my mid 20s and not able to access
Identifying information about my donors I feel it was a missed opportunity to educate the public that pre2 2005 donors can re-register and remove their anonymity we have had people already start to inquire about removing their anonymity which and as the campaign goes on whether that’s egg sperm or embryo
Donors um that will be part of it to encourage people to come forward to re register if they want to I’ve been in situations where donors have been used to create more than 10 families um lawfully under the code of practice but find it hard to find information on how
This happens do the HFA record how many breaches there have been and what happens in these situations does the donor know that maybe 11 or 12 families have been created we are aware that there has been some breaches they tend to be more historical than than now um
There are there is going to be um some communic about this I think it might be next month or the month after in clinic Focus because we’ve now got a new we’re going to have a new register tool which enables us to um get this information and for clinics to access this
Information a lot a lot easier um so yeah keep an eye on Clinic focus and there’ll be some Communications about that