2020 We Are Donor Conceived Survey

we-are-donor-conceived

2020 WE ARE DONOR CONCEIVED SURVEY REPORT

Posted September 17, 2020

Introduction

The 2020 We Are Donor Conceived survey was designed to provide greater understanding about the feelings, perspectives, and experiences of people conceived via gamete donation. To garner as many responses from donor conceived adults as possible, the survey was shared on two Facebook groups for donor conceived people: We Are Donor Conceived and the Worldwide Donor Conceived People Network. Several individuals in these groups also shared the survey link with donor conceived individuals who are not members of either group.

About We Are Donor Conceived

wearedonorconceived.com is a multi-purpose online space where donor conceived people can share their stories and find information and resources. A Facebook group by the same name was launched in November 2016 and has quickly grown to over 2,000 members. 

About survey participants

A total of 481 donor conceived people ranging in age from 13 to 74 participated in the 2020 survey. The majority of participants (87%) were between 20 to 40 years old. The survey attracted responses from people born in 15 different countries, including Germany, Canada, and the UK. Nearly three-quarters of respondents (72%) live in the United States.

Most participants (86%) were female and conceived via sperm donation (95%). The majority of respondents (89%) indicated the donor used in their conception was made anonymous, with no identity disclosure agreement. Eighteen respondents (4%) indicated their parent(s) fertility doctor used his own sperm to conceive them.

The majority of respondents (78%) were raised primarily by heterosexual parents, while 16% were raised by a single parent and 6% by same-sex parents. Several respondents selected multiple options for this question, indicating their family arrangement changed during the course of their childhood and formative years. Nearly half (44%) of respondents grew up with a donor conceived sibling, either from the same donor (17%) or a different donor (27%). Five percent grew up with an adopted sibling.

Learning about being donor conceived

A third of respondents (34%) indicated they discovered the truth about their origins as the result of taking a commercial DNA test such as 23andMe or AncestryDNA. Among those whose parents told them how they were conceived, 34% were told as a teenager or adult. Only 21% have known they are donor conceived since they were an infant or child.

A trend towards openness

The 1990s are often cited as a turning point towards openness and transparency, as more single women and lesbian couples began accessing donor sperm to conceive a child. Survey results lend some support to this theory. Among those born in 1990, 38% learned the truth about their conception from their parents as a child or infant. For those born between 2000-2010, this figure jumps to 60%. 

Respondents who were born before 1990 were significantly less likely to have learned the truth about their origins from their parents at a young age. Among those born in the 1970s, only five percent learned they are donor conceived from their parent(s) as a child or infant. These findings suggest that the majority of donor conceived people do not know the truth about their origins.

Family arrangement is the single biggest predictor of openness. Three quarters (76%) of those raised by a single mother or same-sex parents learned they are donor conceived as a child or infant. By comparison, only 9% of respondents raised by heterosexual parents knew they were donor conceived as an infant or child.

Year bornParents told me as a child/infant (% of respondents)
2000-200660%
1990s38%
1980s14%
1970s5%
Before 19690%

Preferred terminology

The 2020 survey asked participants to identify which terms for individuals conceived via donor-assisted reproduction they identify with. Donor conceived was the most commonly selected term (selected by 95% of respondents), followed by donor baby (selected by 22%) and half adopted (selected by 21%). Less frequently selected terms include test tube baby (15% of respondents), pre-conception adoptee (5% of respondents) and ART adoptee (4% of respondents). Multiple selections were allowed and results indicate that most respondents identify with more than one term.

Perceptions of the donor

In the donor conceived community, there is some frustration around industry-created terms like “donor” to describe a person who is financially compensated for providing biological material to create a child. For the sake of brevity, survey questions primarily used the word “donor” to denote the person who contributed half of a donor conceived person’s DNA. When asked how they describe this person, respondents indicated they use a variety of terms. Biological father/mother was the most commonly cited (selected by 74% of respondents), followed by sperm/egg donor (selected by 59%).

Other frequently selected terms include donor father/mother (cited by 31%), genetic mother/father, (cited by 19%), and mother/father (cited by 12%). Less commonly selected terms include dad/mom (7%), bio dad (7%), progenitor (4%), and genetic contributor (4%). To honor the words we use, for the remainder of the survey, the terms “donor” and “biological mother/father” will be used interchangeably throughout the data reporting.

The widespread impact of DNA testing 

Commercial DNA testing services such as AncestryDNA, 23andMe, MyHeritage, and FamilyTreeDNA aren’t just revealing the genetic origins of individuals conceived via sperm and egg donation. Survey results indicate these kits are also a popular tool for donor conceived individuals looking to learn more about their ancestry, family, and health.

Ninety five percent of survey participants said they have taken a DNA test. Twenty percent indicated they did so to find their donor siblings or learn the identity of the donor him/herself. Respondents were also interested in what information these tests could provide about their ancestry (30%) and health (16%).

DNA testing has effectively ended any promise of donor anonymity. Among survey respondents, 78% said they have successfully identified their donor through DNA testing (sometimes with the aid of genetic genealogy and/or search assistants), while 9% learned the donor’s identity from a sibling. Only 4% of respondents indicated they identified the donor via an official registry, such as one maintained by a government agency, the sperm bank, or another registry.

Finding siblings through DNA testing

DNA testing services are connecting donor conceived people with their donor siblings. Seventy percent of respondents have identified at least one donor sibling this way. Most (79%) have found one to ten siblings while 5% have discovered 50 or more donor siblings.

As the DNA testing databases grow, total sibling counts are likely to increase. During the past year, 41% of respondents said they have discovered one to five new donor siblings.

The power and importance of DNA testing services can not be overstated. Ninety percent of respondents say it is important to know the identity of their donor siblings and 89% say it is important to know the identity of the donor. For people conceived via gamete donation, these services are the best (and sometimes only) available method to connect with donor siblings or discover the identity of their unknown genetic parent.

Attempting contact

When donor conceived individuals discover the donor’s identity, it is commonplace for them to attempt contact. Survey results show that among those who have identified the donor (and he/she was not deceased), 80% attempted to communicate with them. 

Among those who attempted contact, 50% said their biological father/mother was happy to hear from them. Approximately one-quarter (23%) said the donor ignored their attempts to communicate or refused to communicate. Five respondents indicated they received a cease and desist letter from the donor. 

Desired relationship with the donor

Motivations for attempting contact range from donor conceived individuals seeking medical history information from their biological parent as a preventative health measure for themselves or their children, to a desire to form an ongoing relationship. The specific nature of that relationship varies from person to person. 

The largest segment of respondents (31%) indicated they hope to form a close friendship, while 21% seek a casual acquaintance, and 19% desire a mentor/adviser-type relationship. Fourteen percent of respondents said they would ideally like to have a parent/child relationship. Only 9% do not desire any form of relationship with the donor. 

Survey results indicate that respondents become interested in meeting the donor used in their conception at different ages. Among those who knew they were donor conceived before age 18, 27% were interested in meeting their biological parent as a child, 36% as a teenager, and 28% as an adult.

Current relationship status

Thirty eight percent of respondents indicated they do not have a relationship with the donor used in their conception. Among those who do, the largest proportion (44%) describe it as a casual acquaintance. Nineteen percent indicate they have a close friendship with the donor and 12% have a mentor/adviser relationship. Only 9% indicated they have a parent/child relationship.

Desired relationship with donor siblings

Nearly half of respondents (49%) indicated they hope to form a close friendship with their donor siblings, while 30% seek a traditional sibling relationship, and 17% want to be casual acquaintances. Only 2% do not desire any form of relationship with their donor siblings. Among those who knew of their origins before the age of 18, 14% were interested in meeting donor siblings as a child, 37% were interested as a teenager, and 45% as an adult. 

Lived experience of donor conception

Participants were asked to reflect on what it was like to learn they are donor conceived. The top five most frequently selected words were shocked, confused, curious, numb, and sad. 

When reflecting on how being donor conceived makes them feel presently, the most commonly selected words included curious (cited by 55% of respondents), unique (cited by 37%), sad (37%), and isolated (33%). Twenty percent of respondents indicated they were happy and 19% said they are indifferent. The word cloud below illustrates the complex nature of being donor conceived. (Words that appear larger were the most commonly selected.)

Overall experience of being donor conceived

Respondents were asked how they categorize their overall experience of being donor conceived. The results indicate a variety of experiences, with a fairly even split between positive, negative, and neutral. 

Feelings about the method of one’s conception

Results for questions that aim to provide greater insight into the lived experience of being donor conceived are more conclusive. Seventy one percent of participants agreed with the statement “the method of my conception sometimes causes me to feel distressed, angry, or sad” and nearly half (47%) said they sometimes feel sad, disappointed, or angry that their parents chose to create them using donor gametes. 

These feelings of anger, sadness, and distress often lead donor conceived individuals to seek help or advice from a therapist or other mental health professional. Nearly half of those surveyed (46%) said they have sought professional therapy to process their emotions around being donor conceived and an additional 17% would like to.

Communication of feelings with parents

Survey results indicate that parents of donor conceived individuals may not be cognizant of how their child feels about being donor conceived. Slightly more than one third (37%) of respondents said their parents are aware of their feelings and only 23% indicated the parents who raised them are supportive of their search for their unknown biological parent.

Comparing late and early discovery

Respondents who learned they are donor conceived prior to age three were significantly more likely to categorize their overall experience as positive compared to those who found out after age three. Early discovery DCP are also less likely to indicate the method of their conception sometimes makes them feel distressed, angry, or sad. Regardless of the timing of discovery, findings were similar with regards to feelings about donor anonymity and the importance of knowing the donor and their donor siblings. 


Early discoveryLate discovery
Overall experience51% positive19% positive
Method of my conception sometimes causes me to feel distressed, angry, or sad48% agree74% agree
Important to know donor’s identity71% agree92% agree
Identity of donor belongs to me81% agree88% agree
All DCP should have the option to know their donor’s identity87% agree96% agree
Important to know donor sibling’s identity88% agree91% agree

Comparing positive and negative experiences

How and why an individual feels about being donor conceived is a complex question that is partly driven by personality and life experiences. However, when comparing those who said their overall experience is “positive” (24% of respondents) vs. “negative” (31% of respondents), some trends do emerge.

As seen in the table below, respondents who classified their overall experience as positive were significantly more likely than those who classify it as negative to have discovered donor conceived siblings, know the identity of the person whose DNA was used in their conception, and indicate they received a positive response from them if they attempted contact.

How would you categorize your overall experience of being donor conceived?


PositiveNegative
Found DC siblings85% of respondents64% of respondents
Discovered donor’s identity85% of respondents51% of respondents
Donor was “happy to hear from them”44% of respondents22% of respondents

Responsibility of donors, recipient parents, and the ART (Assisted Reproduction Technology) industry to donor conceived individuals

Sperm and egg donors might be surprised to learn that 66% of respondents believe they “have a moral responsibility to their donor conceived offspring”. Exactly what this responsibility looks like in practise varies from person to person.

With regards to the multi-billion dollar Assisted Reproduction Technology, results are even more decisive. Ninety two percent of those surveyed agree with the statement “The ART (Assisted Reproduction Technology) industry has a responsibility to act in the best interest of the people it helps to create”. A mere 1% of respondents disagreed with this statement.

All involved parties (parents, donors, and ART industry professionals) ought to know that 70% of respondents believe they have been harmed by not knowing the donor’s identity and 80% believe they have been harmed by not knowing the donor’s medical history.

The explanation for these feelings of harm is perhaps best understood by how survey participants responded to statements regarding the donor’s identity and family health history, such as “The identity of my donor is information that belongs to me” (86% agree), “My donor is ‘half of who I am’” (77% agree), and “It is important for me to have a health history for myself/my children” (96% agree / 95% agree).

Attitudes about donor conception and the need for reform

Regardless of their own personal experience with being donor conceived, the majority of respondents indicated strong support for donor conceived individuals to have the option to access important information like how many donor siblings they have (94%), the medical history of their donor (99%), and the identity of their donor (94%).

Those who have been denied crucial information about their genetic identity and family health history understand the importance of this information. Eighty eight percent of respondents believe it is a basic human right to know the identity of both biological parents.

Support for anonymous and non-anonymous donor agreements

Seventy six percent of respondents do not support anonymous donor conception. The use of non-anonymous/identifiable donor eggs or sperm to conceive a child has more support amongst respondents: 53% agree with this practice.

Moving forward ethically

The need for urgent legal reforms that safeguard the best interests and basic human rights of the people created via donor conception is clear. Among the donor conceived population, there is broad support for common sense reforms such as limiting the number of offspring per donor, abolishing anonymous donation agreements, and requiring pre-donation counselling for parents and donors. 

Support for specific reforms

Establish a set limit on how many offspring a single donor can produce: 92% support; 83% say the limit should be fewer than 10 offspring per donor

Require donors to make updated health records available to donor conceived people: 92% support

Require pre-donation counseling for intended parents: 85% support

Require pre-donation counseling for donors: 84% support

Abolish anonymous donation agreements: 81% support

Abolish anonymous-until-18 (open-ID) agreements: 50% support

Require the donor’s identity be available to the donor conceived person from birth: 67% support

Include all genetic and social parents on a child’s birth certificate: 49% support

Ban payment for sperm, egg, and embryo donation: 47% support

Establish a maximum payment for gametes and embryos: 37% support

Require donors be available for a relationship with the donor conceived person from birth: 33% support

Opinion statements

I support the use of anonymous donor eggs or sperm to conceive a child.
11% agree; 76% disagree; 13% neutral

I support the use of non-anonymous/identifiable donor eggs or sperm to conceive a child.
53% agree; 22% disagree; 25% neutral

Anonymous egg or sperm donation is unethical.
74% agree; 12% disagree; 14% neutral

It is important for me to know the identity of my donor.
89% agree; 5% disagree; 6% neutral

It is important for me to know the identity of my donor siblings.
90% agree; 4% disagree; 6% neutral

It is important for me to have a complete family health history for myself.
96% agree; 0% disagree; 4% neutral

It is important for me to have a complete family health history for my children.
95% agree; 1% disagree; 4% neutral

It is a basic human right to know the identity of both biological parents.
88% agree; 5% disagree; 7% neutral

The ART (Assisted Reproduction Technology) industry has a responsibility to act in the best interest of the people it helps to create.
92% agree; 1% disagree; 7% neutral

Gamete (sperm and egg) donors have a moral responsibility to their donor conceived offspring.
66% agree; 13% disagree; 21% neutral

The method of my conception sometimes causes me to feel distressed, angry, or sad.
71% agree; 22% disagree; 7% neutral

The identity of my donor is information that belongs to me.
86% agree; 4% disagree; 10% neutral

My donor is “half of who I am.”
77% agree; 12% disagree; 11% neutral

All donor conceived people should have the option to know their donor’s identity.
94% agree; 3% disagree; 3% neutral

All donor conceived people should have the option to know their donor’s health history.
99% agree; 0% disagree; 1% neutral

All donor conceived people should have the option to know how many donor siblings they have.
94% agree; 2% disagree; 4% neutral

All donor conceived people should have the option to learn their donor siblings’ identities.
83% agree; 6% disagree; 11% neutral

I worry that I do not have a complete and/or accurate family health history.
72% agree; 15% disagree; 13% neutral

I worry that I might unknowingly enter into a romantic relationship with a donor sibling.
43% agree; 35% disagree; 22% neutral


Opinion statements
Strongly AgreeAgreeNeturalDisagreeStrongly Disagree
I support the use of anonymous donor eggs or sperm to conceive a child4%7%13%21%55%
I support the use of non-anonymous/identifiable donor eggs or sperm to conceive a child20%33%25%11%11%
Anonymous egg or sperm donation is unethical54%20%14%9%3%
It is important for me to know the identity of my donor72%17%6%4%1%
It is important for me to know the identity of my donor siblings66%24%6%4%0%
It is important for me to have a complete family health history for myself81%15%4%0%0%
It is important for me to have a complete family health history for my children81%14%4%1%0%
It is a basic human right to know the identity of both biological parents73%15%7%3%2%
The ART (Assisted Reproduction Technology) industry has a responsibility to act in the best interest of the people it helps to create79%13%7%1%0%
Gamete (sperm and egg) donors have a moral responsibility to their donor conceived offspring43%23%21%8%5%
The method of my conception sometimes causes me to feel distressed, angry, or sad41%30%7%13%9%
The identity of my donor is information that belongs to me65%21%10%3%1%
My donor is “half of who I am”50%27%11%9%3%
All donor conceived people should have the option to know their donor’s identity77%17%3%2%1%
All donor conceived people should have the option to know their donor’s health history91%8%1%0%0%
All donor conceived people should have the option to know how many donor siblings they have79%15%4%2%0%
All donor conceived people should have the option to learn their donor siblings’ identities60%23%11%4%2%
I worry that I do not have a complete and/or accurate family health history46%26%13%13%2%
I worry that I might unknowingly enter into a romantic relationship with a donor sibling16%27%22%23%12%