And that's a wrap!🎬Thanks to everyone who participated in this #ESHREjc 🙌

Many thanks to our experts @giuliana-baccino.bsky.social @marianavmartins.bsky.social @aindekeu.bsky.social @fertilityeurope.bsky.social

& [email protected] @claudialampic.bsky.social

See you in November!👋

Many thanks to all participants, experts, authors and to @ribeirosara.bsky.social and her team for leading this interesting edition of the #ESHREjc 🦋
See you next time! 🙌

But guidelines on how to handle late disclosure should be provided to parents in need. There is a website in Swedish on donor-conception that includes info on late disclosure kunskapsguiden.se/omraden-och-... I know that the Donor Conception Network has material on Later telling in English. #ESHREjc

It is good to emphasize the child's right to know and that it's always better if the parents (preferably both) are the ones who disclose the donor-conception. And that it is never too late! But parents need to be prepared that their child can have negative feelings they did not tell earlier #ESHREjc

I agree. And, importantly, longitudinal studies of donor-conceived families also provide access to DCPs that are not self-selected through their interest in (their) donor conception. #ESHREjc

That is most likely true. Many studies show DCPs take their parents feelings into consideration regarding exploring donor-info. But for some it could be that good family relationships make the donor less interesting, i.e. they have their family and maybe are not that interested in genetics. #ESHREjc

This is a very important point: We asked teenage DCPs about their interest in requesting donor-info. DCP interest will probably vary during life and can both increase/decrease as they grow older and maybe feel more confident in what they want to do regarding donor-info/contacting the donor. #ESHREjc

I totally agree, the adolescents' views may change in the years to come, and we hope to receive funding to conduct an additional follow-up. As mentioned before, some of these adolescents (from OD-families) have been followed-up with individual interviews and analysis is ongoing. #ESHREjc

I would not set a frequency on talking. It is not about 'getting the info across' but 'opening the topic, this topic =ok'. It is about the way you talk about it with your child (with confidence, accepting differences in how you as parent/ child experience DC, handling own emotions etc). #ESHREjc

Longitudinal studies are so important because they allow us to follow and support participants across different stages of development and throughout their lives #ESHREjc

From practice experience: teenagers might be curious but are also aware that you get info abou/ meet a genetic related stranger. That can be daunting as you don't know how it will turn out. Some want to wait until they feel a little bit more self-confident to handle it ( healthy coping) #ESHREjc

It’s an important reflection. While we should continue to encourage early disclosure, we also need to make space for those who haven’t disclosed at a young age and may be struggling with disclosure later in life. What approaches or strategies can support and facilitate later disclosure? #ESHREjc

This also a one-point in time set-up ( understandable, no critique to the study) but people might have different views in 1 year for example. We should be carefull to treat these answer as if they were 'final' answers/ decision #ESHREjc

We should not forget the age of the participants. While 'wanting donorinformation or not' might seem/ is an interesting question for research there might be/is lot's of other stuff going on in a teenagers life that might be much more interesting than donorinfo #ESHREjc

This is an important point! Whenever I'm interviewed about disclosure and the benefits of early disclosure, I try to also mention all those parents who really intended to disclose, but never found "the right time". As Henrik said - it's never too late, but may need some preparation. #ESHREjc

📌 Here are the summary slides from our September #ESHREjc discussion so far!

A few key points and perspectives that have emerged from the discussion👇

It's a tricky question! A difference is the donor volunteered to donate, DCPs are not in the same position. Any system that facilitates info on same-donor peers needs to take all parties into consideration, as some want contact with same-donor peers and others seem to not be interested. #ESHREjc

It is not an easy question to answer. The current system is dependent on the parents disclosing. Many do, but some choose not to tell the child. One possibility would be to add information on the donor-conception to the DCPs own medical records to ensure access to this information. #ESHREjc

I absolutely agree, best to start the disclosure process very early. But I would also like to add that it is never too late for parents that for some reason haven't disclosed to the child. It is always better if the information comes from the parents rather than by accident (ex. DNA test) #ESHREjc

Absolutely, in my opinion an European level is needed. #ESHREjc