There is a lot of injustice in some historical and current donor conception practices. A lot of our community are very passionate about creating lasting change in this area. Coming from the belief that the best interest of the human created by the fertility industry be the paramount consideration in any circumstance, pockets of advocacy have been happening for decades. It is hoped that by bringing together those individuals to work together within the structure of a charitable organisation, DCUK can become a trusted authority in the UK on the donor conceived experience and how to enable to best possible outcomes for donor conceived people.
Advocacy section in the DCUK Consultation
There is a lot of injustice in some historical and current donor conception practices. A lot of our community are very passionate about creating lasting change in this area. We do however need to be mindful what messages we are putting out into the world, as these messages will be very important to how our new peer-led organisation is received and/or supported by other people within society and organisations, including those supporting the rights of minority groups.
Recent years have seen developments which support our desire for change. For example, on November 19th, 2019, in front of the UN it was seen that practices both past and present result in the deprivation of the fundamental rights guaranteed by the convention on The Rights of the Child. Including, but not limited to rights conferred by articles 7,8 and 35.
‘Everyone has the right to identity, the right to family relations and the right not
to be bought or sold in any form.’
These are the rights that the signatories to the convention- literally every country in the world, have a responsibility to protect.
As Right to Know (rightoknow.us) state,
‘The fertility industry is creating people, not children and we have the right to
know any and all genetic history.’
Coming from the belief that the best interests of the human created by the fertility industry be the paramount consideration in any circumstance, pockets of advocacy have been happening for decades. It is hoped that by bringing together those individuals to work together within the structure of a charitable organisation, Donor Conceived UK can become a trusted authority in the UK on the donor conceived experience and how to enable the best possible outcomes for donor conceived people.
Alliances and knowledge sharing relationships are beginning to happen internationally. In particular with Australia and USA at this early stage. Developing these relationships is important to ensure that the UK is visible on the international advocacy stage and also that Donor Conceived UK exists to be a trusted source of UK specific knowledge.
Recommendations for Creating Lasting Change
During the consultation process the areas participants talked about creating
change in included:
- Advocating for the rights of DCP to access information about their origins, medical history and heritage with DIGNITY (which overlaps with educating others on the DC Experience)
- Advocate for robust Implications Counselling for intended Donors and Recipients. For example, 1) content should be created with input from people with lived experience of donating gametes a significant time ago (more than 18 years) and also adults with lived experience of being donor conceived. 2) ‘Conflicts of Interest’ should be challenged if internal clinic staff undertake the sessions. 3) An appropriate number of minimum sessions should be implemented i.e. more than one)
- Reforming birth registration law in the UK to include information on both genetic and legal parents on birth certificates
- Removing Donor anonymity retrospectively (like Narelle’s Law in Victoria, Australia)
- Seek an official apology (via The Joint Committee on Human Rights) in recognition of the lasting suffering caused by AID/ donor conception practices pre-1991, involving the NHS and the fertility industry.
- Reverse the law that allows freezing of gametes for up to 55 years for the purposes of family building. This is felt too long ethically and not in the best interests of donor conceived people: Having genetic siblings that are potentially 55 years older than them and biological parents that are potentially over 100 years old at date of conception is not without psychological challenges to those affected. Parliament passed the changes to the storage law (under UK fertility law), in April 2022 under the Health and Social Care Act 2022.
- Call for a ban on the importation of reproductive tissue if International clinics involved cannot be held to UK standards.
- Advocate for open ID of Donors from birth (facilitated via clinic), thus ending anonymity
- Campaign to have the UK Donor Sibling Link (DSL) opened pre-18, enabling parents to connect with their children’s donor siblings pre 18 on an opt in basis and in a verified way
- Advocate for the option of Donor/Recipient connection on an opt in basis for children already born to open ID donors but have yet to turn 18
- Advocate for funding for genetic testing, screening and counselling for health reasons in the absence of medical history
- Advocate for more presence of DCP as trustees/ board members in fertility industry organisations
Any one of these causes is a huge undertaking but serves to demonstrate the need for a new peer-led charitable organisation to represent donor conceived people, donors and others inter-generationally affected by historical donor conception practices.
More about our recommendations for lasting change can be found in our consultation document. DCUK’s response to the HFEAs recommendations to Modernise Fertility Law can be read here.