#hfeaconference February 2014 Jessica Watkin HFEA donor information Improving the sharing and quality of

 Introduction (5 minutes)  Presentation from Victoria Ryder (10 minutes)  Table discussions (45 minutes)  Summary and feedback (30 minutes) Format of the workshop

HFEA Code of Practice Guidance Sharing personal donor information The centre should give people seeking treatment with donated gametes or embryos non- identifying information about donors whose gametes are available to them, including the goodwill message and the pen-portrait (if available) “ ”

Why sharing information is important Sharing information encourages openness with children about their origins Better to tell a child about their donor conceived status in early childhood Important for patients to have as much information as possible to make a suitable choice and to prepare them for informing children No surprises about the donor after conception has taken place

Patient survey results HFEA donation patient survey: via DCN, INUK Over 200 responses Pen portrait important for:  Informing children of their origins - 83%  To help choose donor - 81% Goodwill message important for:  Informing children of their origins - 75%  To help choose a donor - 50%

We would like to explore: if and how your clinic makes this information available to people seeking treatment whether patients find it beneficial or not – and why any concerns you may have about disclosing this information and how the HFEA could help Varied practice among clinics: why?

valuing the donor, including respecting confidentiality the interests of the donor conceived child, including the benefits of informing them in infancy of the circumstances around their conception the right of people seeking treatment to have access to information relevant to forming a family Principles to bear in mind…

1. Does your clinic inform people seeking treatment that they can access the pen portraits and goodwill messages of various donors? 2. If so, do you offer this information to them, or wait to receive a request? Please share your experiences of this. Table discussion

3.In your experience: What percentage of patients request pen portrait/ goodwill message? What stage of their treatment do they request it How do they use this information and what value do they place on it? Table discussion

4.If you do not share information before treatment, do you: Share after a donor has been selected? Share once a pregnancy has been achieved Share once a child has been born Never share Why? Can the HFEA help? Please share your experiences… Table discussion

Can one person from each table feedback key points from your discussions. Feedback….

Any questions? #hfeaconference2014

Thank you. #hfeaconference2014

‘Quick’ coffee break