What do we know about donors?

Just set back from London’s busy Tottenham Court Road and round the corner from University College Hospital’s very swizzy new Cancer Centre is the old Royal Ear Hospital, now taken over by UCL’s Bartlett School of Architecture.  This rather cold and slightly strange venue was where Progress Educational Trust’s first of three free evening events on gamete donation took place on Wednesday night.  It was titled Giving: The Donor Perspective.  What seemed odd at the beginning was that there was only one donor on the panel, but on reflection I suspect it was probably the funding from the Wellcome Trust that determined the range of speakers, some of whom contributed more than others to understanding the donor perspective.  But could it be something else as well…

Kriss Fearon a former egg donor and regular commentator on this blog kicked off the evening by exposing and then exploding the myth that egg donors are saints and sperm donors sleazy old men.  She paid tribute to the privations that sperm donors have to agree to in order to be accepted by a clinic and their commitment to a changed life-style during their period of donating and put in a plea for Thank-You cards for sperm as well as egg donors.  A great idea.   Kriss herself is insistent that she is just an ordinary person wanting to help but also someone who, childless herself, is interested in passing on her genes – her biological legacy – as it was put by one of the two sperm donor stories featured in the information packs provided.  Kriss also felt that money was a facilitator rather than a motivator for donation.  She could not have donated on the three occasions that she did without all her expenses being covered, although this was at a time before significant money was involved in gamete donation.  (If I’ve got anything wrong here Kriss just let me know and I’ll correct it).

DC Network opposed the increased payment, euphemistically known as compensation, for donors that came about as part of a review of donation services in 2011.  The current situation as set out on the HFEA website is –

Egg donor payment – As an egg donor you can receive compensation of up to £750 per cycle of donation, to reasonably cover any financial losses incurred in connection with the donation, with the provision to claim an excess to cover higher expenses (such as for travel, accommodation or childcare).

Sperm donor payment – Payment of donors is prohibited. As a sperm donors you can receive compensation of up to £35 per clinic visit, to reasonably cover any financial losses incurred in connection with the donation, with the provision to claim an excess to cover higher expenses (such as for travel, accommodation or childcare).

It is clear from the above that considerably more than £750 or £35 is available to be claimed.  We heard at the meeting that many donors do not actually claim any money at all – although it was unclear if this applied more to sperm than egg donors – but some anecdotal evidence from recipients that has come DC Network’s way regarding the profile/potential motivation of egg donors that they have been offered, leads the organisation to believe that what is needed is some good qualitative research on donors who have come forward since the £750 plus payment has become available.   Shorter waiting lists and more UK egg donors is on the face of it wonderful news, but they do need to be the right people.  It’s quality, in terms of identifiability at 18, and not quantity that counts in the end.

Sorry, that’s a bit of a detour from the PET meeting, which next featured Venessa Smith, Co-ordinator of Donor Services at the London Women’s Clinic (LWC) and the London Sperm Bank as well as sometimes giving professional in-put on DCN’s Preparation for Donor Conception Parenthood workshops.  LWC has an incredibly dynamic, go-ahead and almost scarily market-oriented approach to donor recruitment.  In response to a plea by the National Gamete Donation Trust ten years ago they have made enormous efforts to make donors feel wanted and respected by responding to enquiries promptly and pleasantly and giving them lots of information before they come through the door.  In this way expectations are managed and although only five per cent of potential sperm donors actually make it through to the programme, they have sufficient men coming forward to be able to offer a good choice to recipients.

Erika Tranfield from the parenting connection web site Pride Angel was not able to be at the meeting in person because of illness.  However, from her sick-bed she impressively put together a power-point presentation with co-ordinated sound that put a powerful argument for known donation.

In these blogs I have often found myself writing about the negative flip-side of known donation, the agreements that have turned sour, the changed emotions and expectations once a child is born and the horrible court decisions that have led to children being made to spend time with a donor ‘parent’ against their will.  Of course there is a very positive side too.  These arrangements can be wonderful for children and parents alike.  Erika’s organisation is undoubtedly the responsible and ethical face of known donation.  Donors and recipients are encouraged to use HFEA licensed clinics, consult counsellors and put in place agreements with solicitors.  No ‘natural insemination’ allowed and safe-guards are in place to prevent donors being in touch with too many women, thereby potentially flouting the ten family HFEA rule.  As anxious as I continue to feel about known donation I couldn’t help feeling that what Pride Angel is offering is coming close to a future that has long been envisaged by Walter and I.  This would be a time when some kind of non-profit agency would bring together donors and recipients and that clinics would only be involved in actual insemination or egg collection/embryo transfer.  In this way donors and recipients could choose each other, possibly with support and guidance from non-partisan intermediaries who had the interests of families in mind, and doctors could do what they are best at.  Which reminds me how wonderful it was to hear Allan Pacey, Chair of the British Fertility Society, say that he was just a scientist and should not be expected to know about what was best for families.  Wish there were more of his sort around!

Lucy Frith, bioethicist from University of Liverpool, raised the issue of conditionality in donation, but even though the question was raised from the floor about recipients being able to place reciprocal conditions, the issue that I sometimes wonder about did not come to the fore.  This is a bit controversial but I wonder if recipients are told the sexuality of their donor or given the choice about having a gay, lesbian or heterosexual donor.  I am not homophobic and nor do I believe that sexuality is genetically inherited but I do know that young people, and often boys in particular, often go through a period of homophobia during their teenage years and that knowing that their donor was gay or lesbian might make coming to terms with their identity of being a donor conceived person more difficult for them.  It might also be a shock for a young person to discover the sexuality of their donor if they choose to make contact post 18, although I would hope that by 2023 when first post 2005 conception young people have option of contact, that homosexuality would be so accepted as to be beyond comment. Of course if parents are comfortable with the sexuality of their donor and include this in discussions with the child then the issue is likely to be of less relevance.  But in order to do this, recipients would need to know and I don’t know if they are currently told.

The final speaker, Allan Pacey, admitted at the end of the meeting that he had been expecting to be asked all sorts of difficult questions to do with his topic of donor screening, but it appeared that the radical deaf lobby had not heard about this event and Allan was untroubled by controversy.

What interested me in the long period devoted to question and comment from the audience was the difficulty that many people had in focusing on the donor.  There were many questions to do with recipients and donor conceived people and their families, each the focus of the next two events.  At one point I really felt the panel should have been referring questions to the five members of DC Network sitting on the wonderful lime green chairs in the audience.  Could this be to do with the historically shadowy nature of the donor in donor conception, the unmentionable other (fertile) person who has for so long been unacknowledged.  Could this have been the unintentional meaning behind having only one donor on the panel?

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About oliviasview

Co-founder and now Practice Consultant at Donor Conception Network. Mother to two donor conceived adults and a son conceived without help in my first marriage.
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14 Responses to What do we know about donors?

  1. Kriss Fearon says:

    Thanks for the review, Olivia.

    The payment question is interesting and a real button pusher for me. The old system meant that donors didn’t always get their expenses covered in full. As part of the Trust we hear about, and are sometimes asked to help untangle, donors’ problems with claiming expenses. This ranges from one donor saying the clinic told him upfront they had no money to give him for expenses (post 2005) so he travelled from south Yorkshire to Manchester for a whole donation cycle at his own expense. Another donor, who supports a wife and three children, costed out his direct and indirect expenses at £2k for his final donation cycle – the clinic covered 1/3 of this. Another couldn’t get the time off work for her collection procedure covered because the hospital argued that she had taken it as holiday so hadn’t actually lost any money. So in the face of things like this, at least the donor will a) actually get some money and b) know in advance whether they can afford to donate based on what they know their costs will be. Bear in mind that some donors don’t take the full £750, but this is their choice. The choice to give a flat fee is (IMO) to make life easier for the clinics.

    Julia raised the issue of £15 being a potential incentive. I firmly believe that concern applies to a sub-set of donors. For example, a typical visit to a clinic for me in my first donation cycle started at 5.30am when I got up, did my injections, hoofed it up the road to the railway station, travelled 90 minutes to Manchester, got a taxi over to Wythenshawe, spent about an hour having an internal exam/blood tests etc, then reversed the process to get back to York and go to work, arriving about 4 hours late. I don’t remember receiving £15 anyway, but I listened to that question thinking, you must be having a laugh! And I’d say that applies to the donors who for example travel down from Yorkshire to London to donate through Altrui, as well as those I’ve mentioned above.

    Sure, if you’re looking at students who live in walking distance from the clinic, that sum might act as an incentive, but then it’s up to the clinic to screen out people they think are unsuitable and make sure people are briefed well enough to make an informed decision. It’s not up to the donor to know the ins and outs of the ethics before they set foot in a clinic, and I feel quite protective about people who offer to donate – they are rare enough, without people being judgemental about their morals.

    I used to live on Wythenshawe Road. Ten minutes in one direction there was a posh private clinic in its beautifully appointed building in a leafy suburb. Ten minutes in the other was Moss Side. If that clinic waiting room is ever full of the working class lads from the estate offering to donate, then we can have a proper debate about money and motivation, but instead, people worry about medical students – on the whole from a comfortable family background with expectations of very well paid work afterwards – using the money for beer. Well thank god they didn’t need to spend the money on food, heating or other essentials! That’s my idea of an unacceptable incentive.

    With regards to the comments about passing on genes, some people are very suspicious of this as a motive. For me personally it’s purely a sentimental attachment to being a redhead. There are only 5% of us in the UK population and as it’s a recessive gene I feel sad at the thought that it might die out altogether. There’s nothing of eugenics about it nor of spreading my wonderful quality genes down the generations – as some people worry!

  2. marilynn says:

    Did they touch on the donors relatives at all and their need to know who the donors children are? I mean if not for general familial contact at least for health and safety purposes; you can’t avoid dating your cousin or niece if you don’t know who they are right? That would be a good donor-centered question. I think we forget, in all the talk and worry that offspring might hook up with their siblings, we forget that the only reason that would happen is that they have no idea who their relatives are and then you realize hey its not just the offspring in danger it’s every member of the donors family. That includes the donor, of course all his children, his parents, his siblings, his nieces and nephews and cousins. His children would be their full cousins or nieces and nephews, full grandchildren, etc. So is there a plan for taking all of them into consideration? Its kind of unfair that an entire family’s health is compromised by the desire of one family member not to raise his children and not to be recorded on their birth records where, family members are always entitled to copies of their relatives birth records, without needing special permission from the person or their parent even while they are minors. Its the only way to stay informed when family communication breaks down but you have to be on the birth record for it to work.

    So I think its good you were talking about the donor for once. But the focus was pretty much money?

    Here in the US people pick characteristics of the anonymous person that they want to reproduce with which is pretty reasonable since you are picking a mate they have to have the attractive qualities you’d want to see reproduced in a child. I suppose you could look for sexual orientation specific no different than wanting blond or Navajo Indian.

    Funny thing about picking an anonymous person that is the kind of person you’d want to date…donors are generally pretty good looking scholastic achievers athletic interesting musical tall…they are like Mr and Ms Perfect and most of them would never actually get together with the kind of regular every day folks that they are reproducing with. Because the choosing is going only one way it probably makes for some combinations that never would have occurred if the donor was also choosing back. Here in the US its an opportunity for a plain older spinster type to have a baby with surf champion track star open heart surgeon who would probably not have gotten together with her under other circumstances. But part of donating is letting someone else decide who you have children with. Roll of the dice.

    • Kriss Fearon says:

      The focus of the talk was not on money. My focus in the response to this write-up was on money, because as a donor I find that’s the thing that people fixate on first. If you haven’t done it you don’t necessarily think what it involves for the donor and if you don’t talk to donors, or listen to what donors say, you don’t always understand why people are doing it. (Especially if they relate it to the US situation where people do get large sums of money for donating… they don’t here.)

      My point is that becoming a donor has a cost attached, the cost of getting to the clinic and having time off work and putting your kids in childcare, and for many people it’s a cost that they can’t bear themselves because they can’t afford it. So the fact that you might need money to become a donor doesn’t mean that’s the main motivation – it’s a facilitator. The outcome is supposed to be cost-neutral, ie the donor’s expenses are covered and they’re not actually making anything on top. The reason it’s a fixed fee is for clinic convenience. Donors don’t have to accept the money of course, if they can afford to do it without, and many don’t.

      And yes donors do get the money to cover expenses not to buy sperm and eggs (though some people conflate the two). However if someone is not responding well to the stimulation drugs or they haven’t got a high sperm count, they’re not going to be able to donate ultimately so that means the cycle would be stopped. If a donor doesn’t produce enough eggs or viable embyos they still get the expenses payment.

    • Kriss Fearon says:

      I raised the issue of donor’s family (especially the children) and made the point that it’s a lifelong commitment which has a big impact on us if the donation is successful. There is a register of who has donated which the offspring can access at 16 to see whether they’re related to a possible sexual partner, but the donor’s children don’t have access to the register, they have to rely on a) their parent having told them they were a donor and b) their partner knowing they are donor conceived. Not a great situation to be in and one which I think should be remedied. Known donation, of course, does resolve this and it’s one reason people prefer it.

      In the UK donors are not your Mr/Ms Perfect – and bear in mind the clinics recruit and select those donors in the US. Here there’s a shortage so as long as you’re healthy, willing, carry no diseases etc then you can become a donor, and a lot of people who become donors are perfectly average and not sporty A student types. Donors are usually matched on physical characteristics by the clinic rather than chosen from a book of donors by the intending parents.

      • marilynn says:

        Good you raised this issue. I think that all the donors relatives should be able to access that list. Obviously when your dealing with full first cousins they should know who their aunt or uncle’s kids are. So the list goes both ways you get to know your child’s identity and they get to know yours? Otherwise it would be unfair give one person knowledge but not the rest.

  3. marilynn says:

    Its funny but if they are only being compensated for their time and not the egg or the sperm then are they compensated whether or not they produce any sperm or any eggs? I’d imagine they still compensate them for their time right because if they did not the whole payment for time vs payment for the gamete would be a sham that everyone could see through.

    Taking that concept a bit further I have wondered will they compensate you for the time it takes to give your eggs or your sperm if you are unwilling to sign the waiver giving up parental rights over your offspring? Because you could be totally comfortable giving up the gametes but then not be comfortable giving up the resulting children right? And if all they are donating is an egg or some sperm and all they are being compensated for is their time taken to give up the gametes then I can see where lots of people would be clamoring to give gametes so long as they were not forced to also give up their children once they were born. Surely there is donation for research unrelated to reproduction that does not require giving up the ability to raise their offspring. Does that pay the same in reimbursement as the kind of donation where they have to give up their children or….

    Is thei donor’s time worth more or less depending upon whether they’ll agree to also give up their children and parental title once their children are born?

    As long as the company or agency is willing to pay donors the same for their gametes regardless whether or not they are willing to give up their kids and parental title I think compensation is fine. It would just be like advance ticket sale to sell your babies at birth if they only compensated donors for their time if they also agreed to let other people take and raise their kid. It would be a sham everyone would know they were selling their children in advance like tickets to next week’s show.

    I’m ready to donate mine and get reimbursed so long as nobody winds up calling themselves the mother of my children later. Study my eggs all they want I’ll take the 750

    • Kriss Fearon says:

      And that’s the problem – most people just see the top line figure and go ooh, that’s a nice little payment, I’ll take that please! and they don’t consider any of the costs involved.

      So for example, putting your two kids in pre-school for an hour or two before school so you can go to the clinic at 7am: let’s call it £8 an hour each so that’s £32 per clinic visit. Eleven visits, £352.

      Travel to the clinic – in my case I was going from York to Manchester via public transport so that would be £35 per visit. Eleven visits, £385.

      Taxis to the clinic (often essential because of public transport timing and the lengthy bus times), let’s be generous and say £8 each way, it’s a good 5 miles from the station. Eleven visits, £176.

      That totals over £900. No change out of your £750, no money to cover your lost hours off work and no leeway for incidental expenses like a sandwich on the train if you’re travelling at lunchtime.

      So yes, if you live in the city you donate in your costs are going to be rather less. If you can walk round the corner to the nearest clinic and your work is flexible or you don’t work, and you don’t have childcare or other care issues to consider, that’s fine. But the UK being what it is, many people do travel a long way like the ones I have mentioned above. Even if you’re just travelling across London your expenses are much greater for lost time off work and childcare because it’s are more expensive place to live and it takes a long time to get across the city.

      Anyone travelling from York to London at short notice would be looking at a return rail fare of over £150 per visit. Petrol for the same trip would cost £85 per visit but of course would take much longer so you’d lose a day off work rather than just a morning. And if you’re not working, you’re unlikely to own a car, so that cheaper option isn’t open.

      I hope my point is clear!

      • oliviasview says:

        Hi Kriss
        But as I said, actually quoted above from the HFEA website, donors can claim expenses for travel, childcare, accommodation etc. in addition to the £750, which it appears is intended as financial recompense for loss of earnings whilst attending a clinic. I actually had no idea about this but was told by the counsellor I was sitting next to at the meeting and confirmed by looking at the HFEA website. So, for those not working or a student it is a nice little earner…as overheard by the writer Kate Brian in Boots when a conversation she thought was about trying to conceive turned out to be one young woman recommending egg donation to another as a way of making money. I really don’t think most donors do it for the money – and we heard that a good proportion won’t accept a fee at all – but from this tiny piece of evidence and an interesting thread on Fertility Friends about the changing face of egg donors, I think everyone needs to be vigilant about those for whom £750 is a motivator. This is why the research needs to start now.

      • marilynn says:

        well said

  4. Kriss Fearon says:

    (Sorry, can’t reply directly to your message).

    On this page: http://www.hfea.gov.uk/egg-donation-and-egg-sharing.html it says: “As an egg donor you can receive compensation of up to £750 per cycle of donation, to reasonably cover any financial losses incurred in connection with the donation, with the provision to claim an excess to cover higher expenses (such as for travel, accommodation or childcare).”

    For sperm donors it’s the same: “Payment of donors is prohibited. As a sperm donors you can receive compensation of up to £35 per clinic visit, to reasonably cover any financial losses incurred in connection with the donation, with the provision to claim an excess to cover higher expenses (such as for travel, accommodation or childcare).”

    So the minimum you can claim is the headline figure, but you can get more if you can prove you need it, and this money is to cover your expenses, unless your expenses are higher. Whether the clinics are all telling donors the same thing is another matter.

    Have they said something different somewhere else?

  5. oliviasview says:

    According to the counsellor I spoke to it is understood and expected at her clinic that donors are paid the £750 plus their expenses. That is how they are choosing to interpret the HFEA guidelines. I suspect it is the same elsewhere, although I have no direct evidence.

    • Kriss Fearon says:

      I suspect clinics who are doing that have been ignoring the regulations for a while; they are very clearly laid out. I know other clinics who are sticking to the guidelines.

  6. oliviasview says:

    Certainly glad to hear that some are.

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