The ethical considerations that Recipient Parents and donors should be aware of (from the perspective of adult DCP) 

By Laura Bridgens, founder of Donor Conceived UK

Donor-conceived people (DCP) may have unique perspectives and feelings about their origins, and it’s important for recipient parents and gamete donors to be aware of the ethical considerations to ensure the best possible outcomes for DCP. Here are some key ethical considerations from the perspective of adult DCP: 

How people are taught to define family is key to understanding differing reactions. Cultural, societal, familial and personal paradigms colour our understanding of family. Whether we agree or not, expectations are subconsciously echoed in the stories we hear as children and the narratives we see being played out on our TV and movie screens. Donor conceived people often hear people say how important family is, while their own genetic connections tend to be minimised to fit with the narratives of others. 

For many, family is everything, for others ‘family’ are those who hurt us the most. Being forced to call someone family can also be traumatic. People create ambient families with people they love who they feel comfortable around. It all boils down to choice. Donor conceived people often lose the right to be able to make that choice for themselves. It’s all too common for those affected by donor conception practices to be offered platitudes which minimise feelings or interpret them in the context of their parents’ infertility or desire to have a child. 

UK law currently does not require a parent to disclose to their child that they are donor conceived, but it is widely understood and proved by research that children fared better when told they were donor conceived earlier. They should feel like they have ‘always known.’ Being honest from the start can help prevent feelings of betrayal or confusion in the child’s later life. To deny a human being the right to know where they come from is harmful. 

Access to information about their genetic heritage is important for DCP to form a complete sense of identity and understand their medical history so it is key that donors fully understand the implications of their donation and the potential consequences for any resulting people born. Donors should be made fully aware of the long-term impact of their decision and the rights of the resulting children to know their genetic origins. 

Because of the popularity and affordability of commercial DNA testing sites such as Ancestry and 23&Me, donor-conceived people today have been accidentally, and often traumatically, discovering the truth about their origins. When the Human Fertilisation and Embryology Act was first introduced there was a general presumption that donation should be anonymous. Over time attitudes have changed, but the law does not fully reflect these changes. 

Donors today should provide detailed and accurate medical history to ensure the health and well-being of any resulting donor conceived people so they can understand and manage their health risks. Equally there is also a need to allow for former donors, family members and extended family members to provide information to be shared, for example when a donor or close family member of the donor is diagnosed, or has died from, an inherited genetic condition. Those who donated after 1991 can do this by lifting their anonymity with the HFEA and pre 1991 donors can join the Donor Conceived Register. Both these routes are reliant on the person knowing they are donor conceived to access this information.  

When it comes to informing others on the DC experience these are some of the themes that DCUK members wished were better understood: (taken from Get access to the DCUK Consultation report here!  

  • Feigning disinterest can be a good way to protect oneself and others from disappointment from the unknown 
  • Those who have always known or known for a while, may not also be able to raise the subject comfortably with recipient parents 
  • The experience of late discovery or disclosure and the impact this has on sense of self, identity and belonging 
  • How family dynamics may change following a discovery or disclosure 
  • The emotional and ethical labour for DCP when they end up as a ‘gatekeeper’ to donor or half sibling information. 
  • The lived experience of having so many questions without answers (or ‘unfinished loops’) 
  • The instinctive pain of kinship loss 
  • The psychological distress implications of large sibling groups 
  • The significance of meeting these genetic relatives, separated through donation, and the ongoing challenges of maintaining relationships of all the affected kin, many of whom are made less visible, and hence these aspects and people are not given their proper weighting or consideration they deserve. 
  • We were not party to the contracts that others signed that affect our lives. We want to hold the key to our genetic truth. 
  • Quash the view that DCP who have an interest in genetics and biological relatives are problematic, bio essentialist or against LGBTQ. It is worth noting that political boundary lines do not map neatly for DC issues. It is distressing to be labelled as heteronormative for caring about the importance of genetic links that most non-DC people take for granted. 
  • The topic of donor and DC rights. Privacy is you not telling me something about you. Secrecy is you not telling me something about me. 

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