Considering the perspective of the egg donor
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Ten minute presentation at 'Experience and ethics of egg donation: an international workshop'. De Montfort University, November 2014 More at: http://www.dmu.ac.uk/research/research-faculties-and-institutes/health-and-life-sciences/reproduction-research-group/the-experience-and-ethics-of-egg-donation-an-international-workshop-.aspx
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Considering the perspective of the egg donor
- 1. Considering the perspective of the egg donor Kriss Fearon
- 2. Background • 3 x egg donor • 2 years as moderator of ED-L, a US-based egg donation mailing list • 8 years as Trustee for the National Gamete Donation Trust – Donor Satisfaction Survey • 18 months with Altrui, an egg donor search service
- 3. • Privacy and influence of the internet Age range Class Parental status Fertility status Adopted Diversity of donors
- 4. Acceptance Treatment begins Collection Results Back to ‘normal’ Enquiry Lack of response Speed of matching Cancelled cycle Problems after collection Emotional journey
- 5. • There is no such thing as an ex-donor – Follow up and tracking life changes • With recruitment, you reap what you sow – Recruitment ‘narrative’ is self-selecting • Future expectations of the recipients – “It’s good we can keep in touch with our donor in case we ever need a kidney or anything” • Donors are not free-floating individuals, they’re part of a family, a social circle ‘Thank you and goodnight’
Editor's Notes
- Photo credit: https://www.flickr.com/photos/beltza/2362132028 Veronica R.
- Despite existence of ‘typical donor’ - don’t include just one persona/donor profile to inform research, marketing or publicity. Particularly since recruitment in some areas is so difficult, finding out more about the minorities and their needs may help understand how to encourage more to donate Less educated women have kids younger. Recipients tend to be older/better off or are simply in the position to afford expensive treatments. “I feel the biggest effect that it has on me relating to being an Ed, is that I know for a fact biological is just a term in so many ways. My adoptive mother is my mother in every shape and form. So I feel as an egg donor there is an even less connection to me because what I give to this woman grows inside her and becomes a part of her.” “You grow inside of the women that raises you, that does make a difference. Or possibly this is what I hope, that a child of egg donation doesn't experience the same or similar feelings of being adopted.” “It seems odd though that openness in adoption is now accepted as paramount throughout much of the world, but openness in gamete donation, where a child is 'engineered', is widely curtailed...I have trouble reconciling this.” People still haven’t got their head round internet privacy issues – easy to share enough information about donation to become identifiable accidentally.
- Visualisation of emotional engagement with donation based on personal observation. Some key touch points for recruiters and key issues about aftercare. Donors don’t begin an enquiry from a position of total ignorance even if they don’t know much about ED – most know someone who is infertile and are aware of how difficult it can be. Enquiry – failure to respond can be crucial as it deters people and they can take it very personally Agreement – most donors want to move on with the donation quickly after they’ve been matched as they’re enthusiastic and want to go ahead. Delays in matching could cause motivation issues. Cancelled cycle – a big worry for most women in case it means they are infertile themselves. OHSS – or any problem after the collection can be a tricky time as the rarity of egg donation means that donors may be isolated from people who understand how they feel and how to treat them. Important that donors are supported throughout. Results – positive or negative need to be put into context. Contextualising a negative result can turn it from a huge disappointment into a potentially positive experience. Can make the difference between someone who is put off for good and who may consider donating again. Back to ‘normal’ level – not really normal as it is not something you forget, it changes your identity and has an impact on your future – see next slide
- If donors are known or identifiable this has implications for the way they behave throughout their life. No longer can just say goodbye to the donor after collection. If a child dies, a parent doesn’t stop being a parent, they just stop the daily business of parenting. Does not change their life experience or identity. Identifiable donors – how well informed are they about how to update records with the HFEA eg moving house, changing name, having children, updating personal statement. Generally what do women think will happen next? How do you recruit donors? If on emotional pleading, do you follow this up through treatment? What about aftercare? If on money, what happens if the dc child wants contact? Does that affect the way the donor sees the relationship? Idea of the donor as a resource for body parts – maybe if your child needs a kidney or a bone marrow transplant from one of the donor’s children. How reasonable is this expectation, how would it be handled and most importantly, how reciprocal is it. Reflects emotional detachment of anonymity – would you talk about a sister or friend that way? “angels” - affects parents too. Donation affects three families minimum. Family of the recipients, family of the donor, family the donor conceived child may have. Has in impact through the generations because of they way we relate family to genetic heritage. Does short term thinking inform recruitment? Emotional work – families, friends, partners do the support and encouragement and childcare that facilitates donation.