Basic Principles for Understanding the Needs and Perspectives of Donor Conceived People
1. Donor conceived people value openness and honesty about their conception story
Many donor conceived people who have “always known” - due to their parent/s telling them at a very young age (from birth to 3 years is ideal) and being open to the range of emotions that donor conceived people can feel about being donor conceived - are relatively comfortable with being donor conceived [2-5]. Donor conceived people need to be celebrated for their whole selves, including characteristics and traits that come from the donor parent/s. It is critical that they do not feel ashamed of who they are and how they came to be.
However, it is important to note that early disclosure of donor conception does not make donor conceived people less interested in knowing the donor parent/s or their donor sibling [3,6-8]. Further, early disclosure does not eliminate or prevent donor conceived people having negative feelings about donor conception [3,6,9]. Parents should not have the misconception that early disclosure is ‘enough’. Nearly half of early disclosure donor conceived people report sometimes feeling sad, distressed or angry about their method of conception . Parents need to make themselves familiar with the range of perspectives of donor conceived people, so they can best prepare for their donor conceived child/adult.
2. Donor conceived people experience a range of emotions about donor conception
Donor conceived people experience a range of emotions about donor conception [3,6,9], which may change depending on their stage of life and experiences [8,10]. Parents should be encouraged to hold space for a range of emotions to best support their child/adult and strengthen their relationship.
3. Donor conceived people would like the emotional freedom to express their perspectives
Many donor conceived people report that their parent/s are not aware of their feelings [3,10]. They would prefer the emotional freedom to express any and all feelings that may arise.
Donor conceived people can feel emotional pressure to feel or be a certain way with regard to donor conception, because they were “so wanted”, their parent/s struggled through infertility to have them, and/or it cost a lot of money and/or planning . They may hide their curiosity about their donor parent/s in order to protect the feelings of their parent/s [6,7,10,12]. Parents are encouraged to be aware of the need for providing truthful and factual information about their conception story without emotionally burdening their child.
4. Donor conceived people use a range of terms to describe the people who donated eggs/sperm/embryos to their parents to create them
Donor conceived people use a range of terms to describe the people who donated eggs/sperm/embryos to their parents to create them. These include donor, biological mother/father/parent, genetic mother/father/ parent [3,6]. Donor conceived people may see themselves as having additional branches to their families, including the donor branch [6,11].
Donor conceived people often feel their preferred terms are not accepted or respected by their raising parent/s, due to their parent/s feeling threatened or emotional about these terms . They would prefer that the terms they choose to use are accepted and respected by their parent/s. What they need from parent/s is active and open support in accepting this additional branch to their story.
5. Donor conceived people would like to know the identity of their donor parent/s
Many donor conceived people believe it is a basic human right to know the identity of both their biological parents , want to know more about them , and are interested in contact with them [6,13]. This curiosity may change over time and be prompted by significant life events such as reaching teenage or adulthood, marriage or forming a significant long term relationship, and having their own children .
In Aotearoa New Zealand the concept of whakapapa (lineage/descent) is sacred to Māori culture and identity. Whakapapa connects people to the generations who have gone before, right back to the whenua (land) and atua (gods), and forward to the generations yet to be born. Knowing your whakapapa, the complete story of where you come from, and your whānaungatanga, those with whom you are closely connected, is the foundation for who you are.
6. Donor conceived people have a variety of motivations for wanting to know the identity of their donor parent/s
Donor conceived people have a variety of motivations when seeking more information about their donor parent/s [5,7,10,14]. These include medical information, to expand identity and curiosity.
Many donor conceived people believe they should have the option of knowing the medical history of their donor parent/s, for their own benefit and for the benefit of their own children [3,5,10,14]. Many of those who do not have this information believe it has done them harm or has the potential to do them harm in the future .
Many donor conceived people would like more information about their donor parent/s including, what they look like, if there is any physical resemblance, shared non-physical traits, motivations for donating gametes, to know more about the aspects of themselves that may have been inherited from that side of their genetic family, to fill in the missing pieces of information about themselves, information about heritage, and relevance to own identity [5,7,10,14].
7. Many donor conceived people would like to develop a relationship with their donor parent/s
While many donor conceived people would like to develop a relationship with their donor parent/s [3,7,14], the nature of this desired relationship varies from person to person. The relationship is commonly imagined as a friendship or acquaintance, and for some may also be imagined as a parent/child relationship [3,8]. Some donor conceived people do not desire any form of relationship with their donor parent/s.
8. Donor conceived people would like to know the identity of their donor siblings and develop a relationship with them
Many donor conceived people believe it is important to know the identity of their donor siblings and would like to develop a relationship with them [3,4,10]. This desire increases in teenage years and adulthood [3,10]. Getting to know donor siblings may be helpful for identity formation by providing genetic mirroring , in the absence of early contact with the donor parent/s. Genetic mirroring is most simply described as being able to see yourself in your family. Donor conceived people who have had early contact with donor siblings report it has been beneficial to them [10,11,15,16].
9. Donor conceived people support limits on the number of offspring from a single donor
Many donor conceived people believe this number should be fewer than 10 offspring per donor . Managing siblings relationships can be complicated and emotionally burdening , and this increases with increasing numbers of siblings. In addition, donor conceived people worry about the possibility of accidental incest with a sibling , and this worry increases when the identity and number of siblings are unknown. This is also a concern for donor conceived people when they have children of their own, that their children will accidentally form intimate relationships with their cousins.
10. Donor conceived people support the need for pre-donation counselling for parents and donors
Donor conceived people support the need for pre-donation counselling for parents  and donors . Donor conceived people acknowledge that donor conception is a complicated and emotional journey and that additional support and information is required for all parties to make ethical choices. Counselling needs to include a range of perspectives of donor conceived people so that donors and parents can make truly informed consent about donor conception.
11. Donor conceived people both value and need allyship from donors, parents and fertility service providers
Donor conceived people currently carry a disproportionate burden of advocacy in donor conception. As donors, parents and fertility service providers become aware of the needs and perspectives of donor conceived people, then we encourage them to take action to educate others in their friendship and family circles, workplaces, communities and politics.
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