Jessica Watkin, HFEA Policy Manager

Improving the sharing and quality of
donor information
Jessica Watkin
26 February 2014
Format of the workshop
 Introduction (5 minutes)
 Presentation from Victoria Ryder (10 minutes)
 Table discussions (45 minutes)
 Summary and feedback (30 minutes)
Sharing personal donor information
HFEA Code of Practice Guidance
The centre should give people seeking
treatment with donated gametes or embryos nonidentifying 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
 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%
Varied practice among clinics: why?
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
Principles to bear in mind…
 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
Table discussion
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
Table discussion
3. In your experience:
 What percentage of patients request pen portrait/ goodwill
 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…
Can one person from each table feedback key points
from your discussions.
Any questions?
Thank you.
‘Quick’ coffee break

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