# Access to donor's goodwill and pen-portrait by egg-sharing recipients



## Beazie (Jan 30, 2011)

Hi,

The HFEA is a statutory body in the United Kingdom that regulates and inspects all UK clinics providing IVF and fertility treatment with donated gametes/embryos.

According to the HFEA, centres should give people seeking treatment with donated gametes and embryos access to relevant non-identifying information about donors, whose gametes are available to the centre, including the goodwill message and the pen-portrait (if available). This guidance is set out in the 'Information for people seeking treatment with donated gametes and embryos' section of the HFEA Code of Practice 8th edition; the relevant guidance 20.1 can be accessed via the HFEA website here: http://www.hfea.gov.uk/3465.html
The HFEA therefore advise that you contact your centre about gaining access to such information.

It appears that some UK clinic offering egg-sharing treatments are denying patients access to that information. Some argue that the donor has not giving consent for that information to be disclosed, this is in breach of HFEA code of practice which states that before consent is obtained from a donor the centre should inform the donor that centre or the HFEA (or both) may disclose non-identifying information about the donor, for example to prospective recipients or to the parents of donor-conceived children. See guidance 20.14 point i) : http://www.hfea.gov.uk/3465.html

Children conceived in the UK with egg/sperm/embryo donor after April 2005 will have the right to have access to know the identity of their donor when they reach the age of 18.

Many organization like Donor Conception Network (DCN) and the HFEA itself advise parents of donor conceived children to be open about their conception. There are many researches on this matter, please check DCN website for more infomation and literature: 
http://www.donor-conception-network.org/WHY%20OPENNESS%20ABOUT%20DONOR%20CONCEPTION.pdf
http://www.donor-conception-network.org/secrecybks.htm

As a future parent of a donor conceived child you would like to make the best possible informed decision regarding the donor and be comfortable with the donor you have been matched with, your child may one day be curious about the person who constitute half of their genetic background and helped them to be conceived.

If you are a donor please be aware that as per HFEA guidance the goodwill and pen-portrait messages can be shared with recipients waiting to be matched with a donor. I imagine writing these messages is not an easy task and would prompt many thoughs and feelings, a life may be created from your donation so it's not a small matter.

I you are a recipients waiting to be matched and have been offered a possible match ask your clinic for all non-identifying donor's information . If the clinic refuse to disclose it please contact the HFEA : http://www.hfea.gov.uk/contact.html

List of all non-identifying as per HFEA:
(a) physical description (height, weight, and eye, hair and skin colours)
(b) year and country of birth
(c) ethnic group
(d) whether the donor had any genetic children when they registered, and the number and 
sex of those children
(e) other details the donor may have chosen to supply (eg, occupation, religion and interests)
(f) the ethnic group(s) of the donor's parents
(g) whether the donor was adopted or donor conceived (if they are aware of this)
(h) marital status (at the time of donation)
(i) details of any screening tests and medical history
(j) skills
(k) reason for donating
(l) a goodwill message, and
(m) a description of themselves as a person (pen portrait)

Good luck to everybody and baby dust to all ! 
xx
Beazie


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## olivia m (Jun 24, 2004)

So glad you have put this message up Beazie.  DC Network is very concerned that some clinics are withholding donor information from potential recipients...particularly of eggs.  It may not be happening so much with sperm.
As Beazie says, do let the HFEA know if this is occurring in your clinic and we would be grateful if you would copy us in at DCN, [email protected]
The person to contact at the HFEA is Nick Jones, head of Compliance.

DCN, and others, have drawn this issue to the attention of the HFEA and they have said they will contact clinics we have named specifically to remind them of the Code of Practice Guidance and will send round a general reminder to others.  We all need to know if this practice is widespread.
Olivia


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