This Q&A is from an interview with Wendy Kramer by the Center for Bioethics and Culture (CBC) National Director, Jennifer Lahl.
[Some information and stats have been updated.]
Q: I've followed your story and founding of the Donor Sibling Registry for some time now. When you founded the DSR it was a direct response to your own son wanting to find his biological father and siblings — right? What have you been most surprised by in running the DSR for 20 years?
A: My son grew up knowing that his donor had signed up for anonymity and that the chances of ever meeting him were slim. So when he found out that he did indeed have half brothers and sisters out there (children also conceived from the donor that I used), he wanted to know them and wondered if they also had any interest in knowing him. His thinking was that even if he never got to know his donor, he might be able to experience that "invisible" part of himself in these half-siblings. The site was therefore created as a place to be found. Respecting donors' privacy and their right to remain anonymous, if that was their original agreement, was important to my son, so he wanted a place where he (and others) could make themselves available to be found.
We hear from sperm banks all the time that these donors were promised anonymity, and they should not be sought out. So, the most surprising thing to me was that right from the start donors started coming to our website and registering. Many of them are very interested in connecting with offspring. Many feel that they never had a choice about anonymity, and most were never properly educated about what being a willing-to-be-known donor actually meant. Some have had a change of heart over the years, as they realize what contact might mean for those whom they helped to create. Many are curious. Many have children who want to know their own half-siblings. We currently have more than 4,100 egg and sperm donors who are on the site, willing to make themselves available for contact. We never dreamed that so many donors would be willing to register on the DSR.
Q: What has disappointed you or frustrated you most?
A: The industry. There is a huge disconnect between the industry and the families that they are helping to create. They are very slow to appreciate the importance of donor-conceived people making connections with their half-siblings and/or their biological parents. They are still resistant to adequately educating both donors nd recipients at the front door so that they can make truly educated choices about donating and about accepting donated sperm or eggs. They have also been neglectful in regards to addressing donor families' needs out the back door and into the many decades that lie ahead. Achieving pregnancy is not the end of the story! The banks are responsive in regards to helping people get pregnant, but then do not offer support to donor-conceived people wishing to gain more information on their genetic and ancestral history. Many will not facilitate mutual-consent contact between offspring and their genetic parents. They do not adequately update medical records and share important medical information. They do not accurately monitor (or limit) how many children are born from any given donor. And some sperm banks, like Fairfax and CLI, have refused to give donors their own donor numbers, thereby actively trying to prohib donors from connecting with families. Some sperm banks, like NW Cryo/California Cryobank, have threatened people for testing their own or their child's DNA and for reaching out to close DNA relatives.
Former California Gov. Jerry Brown once said, "First you have a desire, then a need, then a right, and then finally, a law." We can apply this idea to donor-conceived people and their right to know about their ancestry, genetic relatives, and medical history, and maybe someday a law that serves their best interests.
Q: You've obviously learned so much. Both from your own personal infertility story and through your leadership in assisting families. Tell me some things you've learned and want to pass on to our readers.
A: More than three-quarters of our surveyed donor offspring would recommend that prospective parents use a willing-to-be-known donor. There is no good reason to choose an anonymous donor. Why bring a child into the world who will have no chance to ever know their donor or anything about that "invisible" side of themselves — their ancestry and their genetic/medical background? Would you want your child to one day say, “If you could have chosen a donor that I would have had the chance to know someday, why didn’t you?” Not all donor-conceived children are curious, but you don't know if you will have one who is. Please, educate yourself on the clinic or sperm bank you are about to use. Find out if they are responsive to families' needs post-pregnancy. Be honest with your child and disclose the truth about their conception right from the start. And please, honor your child's curiosity and right to search, find, and connect with their biological family.
Some sperm banks offer "open" or "willing-to-be-known" donors, which means that a child *might* have the opportunity to meet their donor when they are 18. I feel that 18 is an arbitrary number, only in place to protect the sperm bank's liability. Evidence of thousands of donor-offspring connections on the DSR shows us that if a donor and a child (and their parents) are willing to make mutual consent contact before a child is 18, that can be an extremely enriching experience for all involved. My son Ryan met his donor and grandparents when he was 15, and several half-siblings also while still a teenager, and they were all extremely positive experiences of expanding our families.
Q: What kinds of things give you hope? What encourages you and causes you to keep going?
A: I know that the DSR's work is making a difference in people's lives. Each time I hear a heart-warming story of connection between half-siblings or a donor-conceived person and their biological parent, it makes me know that what we are doing is worthwhile and valuable. Each family that I hear from that has decided to tell their child the truth, or choose a "known" as opposed to an anonymous donor, or thinks seriously about donating eggs or sperm because of what they read on the DSR — it lets me know that as a community, we can influence decisions and lives.
Q: The infertility industry, as it is currently practiced in the U.S., is often referred to as “the wild west” in regards to the lack of regulation and oversight. Do you have some ideas and suggestions for regulation or legislation?
A: The industry is unregulated and is in dire need of some sort of oversight. We have many sibling groups of 25, 75, and up to 205+ on the DSR. No one is tracking or knows how many donor-conceived people have been born. Our research shows that between 22%-27% of sperm donors donate to more than one facility. No one is tracking, updating, or sharing vital medical information. Thank goodness many of these families can share medical information with each other on our site. No one is addressing the needs of the donor-conceived. No one is tracking egg donors' health histories. We have partnered with prestigious academic institutions all around the world, like Cambridge University in England, and have been conducting and publishing many full-scale studies of donor families, because the infertility industry has just not done so. We hear that the industry would prefer to "self-regulate." Well, that just is not working. The reproductive medicine industry has been aware for years about the large groups of half-siblings, yet we see no movement toward updating their record-keeping — only a continued dismissal of the research being published.
Although I am unsure of how the government would do at such a task. Maybe a group consisting of government representatives, industry representatives, therapists, bio-ethicists, donor-conceived people, parents, donors, and other interested parties. I believe we should look to other countries that have regulated and see what has worked and what can be improved upon within their systems.
I am very clear about the problems ... but not so certain about the solutions.
Q: What is the most important piece of advice you wish you could convey to all parents of donor-conceived children, based on your experience with thousands of families built by reproductive technology?
A: The word "gamete" is used in a clinical setting for the egg or sperm product that is sold to the bank and then purchased by prospective parents who need it. The term may make it easier for some parents to think of it as simply a "donated cell," or a "piece of genetic material," and nothing more. But I know very well, from my own son and from the many other offspring I’ve talked to over the years, that this may not be how they think of it. Many kids do accurately think of that “cell” as one half of their genetic background and heritage.
My biggest piece of advice to parents is to let your kids choose for themselves how they define their donor relatives in reference to their life.
My greatest fear is that a child who is told that the donor did nothing more than donate a “cell” or a "piece of genetic material" grows up unable to express their true thoughts, curiosities, and feelings on the matter. I’m not a psychologist, but I do consult with many and know this kind of suppression is not healthy — for the child, or for the parent-child relationship.
Again and again, we have heard on the site from donor-conceived adults who have a strong desire to understand this invisible side of themselves. We have heard numerous stories of donor-conceived kids and adults who connect with their donor relatives — half-siblings, donors, and even donor-grandparents — and report it as a profound and meaningful experience. These people are acknowledging — sometimes even confessing — a genetic bond that is surprisingly important to them. That’s why I urge parents to allow kids to decide for themselves. To make sure the child doesn’t perceive normal curiosity as betrayal, or hurtful to the parent. Just because parents feel one way about donor conception in no way guarantees that their children will feel the same way. Please let the discussion and decisions on genetic importance be child-driven over time.
If parents feel a sense of shame about using a donor, or haven't fully processed their own infertility, or grief about not being genetically related to their child, then they risk passing along these unresolved feelings, in the form of shame, to their child. These are issues that are best resolved BEFORE their child is born. That way they can fully support their child with any curiosities they may have about their first- and second-degree unknown genetic relatives. Too many donor-conceived people come to the DSR behind their parents' backs, afraid of hurting them. These parents then insist that their children are not curious — a real disconnect.
Q: A child who considers the donor important is delivering the kind of situation that most heterosexual couples want to avoid, right? Isn’t that why so many couples decide not to tell their children the truth about their origins? Fear that the donor will replace the non-biological parent, not in day-to-day living, but in emotional connection?
A: Yes, fear (or insecurity) is the main reason couples don’t tell. Shame about infertility is another. A large number of non-biological parents (men and women) believe it stigmatizes the relationship — or at least their standing in the family — if people know that someone else was required to create that child. This is a very understandable, common concern. But for a parent to relegate their importance in the family as being related to whether they can produce sperm or egg is really, when you think about it, a secondary role.
Our reproductive “goods” have absolutely nothing to do with our role as parents. And to think otherwise is a demeaning position — for ourselves, our partners, and our children.
It might seem contradictory that lack of biological connection means nothing in our parent-child relationship, yet the biological connection to the donor might mean so much to our child. But that’s exactly the point. A donor is not important to the child in the way we tend to think. As parents, we’re off the mark when we think our child wants to find something in the donor that he cannot find in us. Really, we’re irrelevant to the story. Our children want to find connections with donors as extensions of themselves, not as extensions of their parents. They have parents. What they don’t have, as fully as they would like, are answers related to their very personal and individualized self-identities. They want to know about their paternal (or maternal) ancestry and medical backgrounds. That’s something we cannot give them. Only the missing donor can.
Q: Let me press the point a step in another direction, then, as I’m sure many parents are inclined. What, really, can it harm a child to not know the truth of his or her origins? By not telling them they are donor-conceived, aren’t we really saving them from asking questions that might be difficult to answer?
A: A child who doesn’t look like his mother or father, and doesn’t share some of the same elusive genetic mannerisms, will just as easily wonder why he or she feels unconnected. Many donor-conceived kids who learn the truth as adults are actually relieved to have an explanation for something they felt but couldn’t understand earlier. And then, as adults, they simply have a stronger round of emotions to get through about why their parents didn’t respect them enough, or trust them with the information in the first place. Many adults feel a stronger bond with their parents after learning the truth, as the relationship between them is now open, honest, and based on truth. Adults who find out or are told at a later age about being donor-conceived can also feel a great sense of betrayal and/or anger. That's why I recommend starting the story preverbal — when your child is a baby before they can even understand the words. Then it just becomes a part of their story and a part of who they are.
Q: What, really, is your agenda in developing the Donor Sibling Registry, and in encouraging families to talk about such private matters?
A: My goal with the DSR organization is simply to help educate those considering using donor conception, those considering donating, and those of us who made decisions long before we were aware of the true ramifications so that we can better serve the needs of not only our children but also those to come. Also, we want to have a safe place for donor-conceived people to educate us about their needs and issues.
I realize that these discussions can sometimes be uncomfortable. It’s an emotional area, and we all have different backgrounds and values to respect as we make our own decisions about what is the right thing to do in our own families. But we all deserve the right to make educated and fully informed decisions.
One thing I do recognize is that the donor industry has so far belittled or neglected or forgotten the rights of the children being born. It has always been about the rights of a parent to have a child, the rights of a donor to be anonymous, and the rights of a sperm bank or egg clinic to make money. But missing from that conversation has been the rights of a donor-conceived child to know about their origins — their ancestry, their medical background, and their close genetic relatives. This is a very important debate and until we bring it up for examination, not only among ourselves as donor-conceived families but also in the larger public eye, the industry in the United States, and around the world, will not make any progress.
And I do strongly feel, as did people in the adoption industry before us, that the industry does need to make significant changes.
Q: Is it the donor industry’s job to implement changes, if parents aren’t asking for them?
A: Many parents are asking for them. Some donors are also asking for change. And more importantly, many donor-conceived people are demanding change. That’s why I’m looking to help them build a stronger, collective voice so that there can be greater impact for the most basic questions we should be talking about. Some parents and some offspring do have different perspectives on what is important to them. We do need to respect the fact that not everyone will agree. But agreeing to disagree is very different from not having the collective conversation at all. Of course, the reproductive medical establishment isn’t going to lead the discussion. They have no financial incentive to do so. That’s why the kind of conversations that happen on the DSR and through research, outreach, and media that we initiate can be perceived as very threatening to them — stirring up debate in an industry that has otherwise been very content to exist on a secretive, private terrain. The thinking among many in the medical establishment that I’ve talked with is that if it’s not broken, why fix it? But of course, it IS broken. Many of our kids do suffer from our choices because we usually aren’t thinking them through the way we should. It’s that “thinking things through” process that I’m hoping to keep facilitating. I’m not trying to make decisions for families. My goal, really, is to bring up the things I’ve learned and enable others to do the same so that parents can make educated choices.
Q: What frustrates you the most about the choices that some parents are making — decisions that you can try to educate them about, but that are ultimately out of your control?
A: Without a doubt, it’s the shame factor. Unconsciously or not, parents can make it so much more difficult for their children to feel pride about the way that they were conceived. Obviously, our children were wanted. Parents wouldn’t go through the steps they do, with something as costly as reproductive technology, if their children were not greatly desired. Yet even a child who doesn’t know he was donor-conceived is going to be denied that truth because the parents feel shame, insecurity, fear, or some other negative emotion. Maybe it doesn’t feel that way to the parent and maybe they genuinely do feel they are protecting their child. Maybe their strong love for the child after birth makes it more difficult to tell the truth later on, for fear of spoiling the attachment or adding an artificial ingredient to something that is so powerful a bond. But in my view, it’s never healthy to mislead your child. Family secrets are always toxic.
In my view, the parent who feels shame about infertility cannot help but project that shame onto the child. In my view, the couple who feels an imbalance as parents, because one is biologically connected and the other not, have far greater issues to discuss than non-disclosure to the child can cure.
The parent who holds the perspective that biology is more important than honesty is short-changing the parenting responsibility. I do have personal experience with many people who have withheld the truth, for various reasons, and it's sometimes challenging to speak with these parents. Early on, we had contact with the mother of two of Ryan’s half-sisters. The resemblance between her daughters and my son was so strong that she knew after seeing him on TV, without knowing our donor ID number, that they were half-siblings. But she and her husband have no intention of telling their children, who are a few years younger than Ryan, that they were conceived from donor sperm. That was 17 years ago, and she still has not told her daughters.
Ryan now has 19 known half-siblings, many of whom had no idea they were donor-conceived. DNA test results have been shocking. Some have had to promise their parents to never speak of this truth. The shame of infertility is being passed down to the kids as the shame of donor conception.This has created some very difficult family situations and unnecessary struggle and heartache.
Finding biological family, including donors and half-siblings, adds to a child’s world — it doesn’t subtract. I strongly believe our decisions as parents should be made with the best interests and the rights of the child in mind, not the fears of the adults.
Q: If donor anonymity is abolished in the U.S., as it has been in many other countries, won't we lose our pool of donors?
A: Let's just say, for argument's sake, that the numbers of donors did decrease. Do the ends always justify the means? Does a parent's right to have a child trump a child's right to know where they come from? We don't have enough organ donors in the U.S. either, but does that give us the right to resort to unethical measures to ensure that we have enough hearts or livers for those who need them? So if there were to be a donor shortage, I believe that this outcome would be more desirable than current practice whereby we are creating children who will have no access to their ancestry, medical background, or genetic relatives. We shouldn't sacrifice ethics for a parent's right to have a child. Having fewer available donors just might be the price of having a more ethically and responsibly run industry. Additionally, "anonymity" is already long gone. The reproductive medicine industry needs to acknowledge this fact and move forward accordingly.
Q: What are the most important changes you would like to see happen in the infertility industry?
A: Ryan and I support the following objectives:
1. Acknowledge the end of donor anonymity. Many egg clinics and agencies are already writing the DSR into their contracts so that parents and donors are connected right from pregnancy or birth. Sperm banks can do the same. 18 is an arbitrary age (sperm bank liability); many donor offspring desire to connect long before the age of 18, and we know that thousands of offspring have formed meaningful relationships with their first- and second-degree genetic relatives while still children. Why try to keep a child from their genetic parent for 18 years?
2. Track all recipients, donors, and births and safeguard all records in a central databank indefinitely. Information to be accessible by all involved families.
3. Mandate reporting of donor-conceived live births from each donor.
4. Limit the number of births conceived with the sperm or eggs from any given donor. 10 is what our community feels comfortable with.
5. Require donors to regularly update their family medical history. Medical Information to be shared amongst families.
6. Mandate full genome sequencing for donors. Share information with families.
7. Push our respective governments to inquire into follow-up health histories of egg donors.
8. Require mandatory third-party counseling for all prospective donors and parents.
9. Sperm banks and clinics should properly educate donors about their legal and financial protection so that they feel safe to come forward.
10. Sperm banks and egg facilities need to properly educate donors and parents about DNA testing (along with public records, Google, and social media), and how it has essentially ended the guarantee of anonymous gamete donation. Stop selling every single vial of sperm and every egg as "anonymous," whether for 18 years or forever.
Contacting your donor for the first time can be an exciting yet scary experience. You might be nervous about making a good first impression, or you might be worried about scaring them away.
Here’s some advice for contacting your donor for the first time:
Be gentle and respectful. This can be a scary situation for donors who haven’t yet been contacted, or who haven’t told their families they donated, or who have family members who are against contact. You want to get your foot in the door as gently as possible.
Reassure them so they know you will allow them to set the boundaries. It can be very important for the donor to know they’re in control of the situation.
Let them know that you don’t want to disrupt their family in any way. You just want to give them the opportunity to know you. This should be an invitation, not a demand.
Let them know that you don’t want anything from them — not time or money or another parent, just the chance to know more about where you come from. For starters, explain the importance of knowing about your ancestry and medical background.
You can also let them know what type of relationship you’d be open to. A friendship? A more familial relationship? Tell them why you think this connection could be fulfilling for both of you.
Appeal to the donor’s heartstrings. Tell them about you (or your kids); it’s helpful to make yourself more than just an idea — an actual human being, and one to be proud of.
Send photos. Again, this appeals to the donor’s emotions. Seeing similarities with the children they helped to create can be profound for a donor who wasn’t sure about contact.
Know that if a donor doesn’t reply or says “no,” it isn’t because of who you are. It’s likely because of their family situation, their lack of emotional bandwidth, or a lack of understanding about what connecting might mean for them and their family. Their hesitation might also be about their own health issues, fear of not being “good enough,” etc.
Have patience. Sometimes a donor needs some time to work things out with their family members. If you get no reply, try again in a few weeks/months. If they say no, let them know you’re always available if they change their mind. Give them space to hopefully work it out and come around.
Keep the focus on yourself (or your kids), even if you know about other half-siblings. Consider sharing that news in upcoming correspondence.
The mission of the Donor Sibling Registry (DSR) is to educate, connect, and support all those in the donor family: parents/prospective parents, donors, other relatives, and most importantly, donor-conceived people. All connecting takes place on the DSR website, but our Facebook group helps fulfill our mission to educate and support because it’s where DSR families come to ask advice, share experiences, and educate themselves about donor industry issues and recent news.
A recent DSR Facebook discussion took a deep dive into the terminology used by some egg and embryo donor parents. This discussion highlighted some confusion regarding what a “biological” or “genetic” parent actually means. A few mothers chimed in:
“I used donor embryos to conceive my daughter. She is not genetically linked to me, but I carried her and gave birth to her. I’m her bio mom, and she has genetic donors.”
“I used a donor egg and donor sperm … I carried them. I am clearly their biological mother — just not their genetic mother.”
“…biological mother and genetic mother are different, though.”
It is also not uncommon for me to hear, when on a phone consult with an egg donor mom, “I carried and delivered my child, so I AM the biological mother.”
To these women, I ask: When your children are older and have taken 8th-grade biology and want to know about their biological mother — the woman who contributed ~50% of their genetics, physical attributes, ancestry, and medical history — what will the conversation sound like? Will you tell them that even though you used an egg donor or a donated embryo, you are the biological mother and the woman who donated the egg isn’t?
A biological parent is the same as a genetic parent. A biological/genetic parent gives approximately 50% of the DNA to a child. Each person has two genetic/biological parents:* One provides the egg and one provides the sperm. Yes, the woman who carries/delivers the child has some influence (epigenetics, diet, stress, etc.) but she is not the biological/genetic parent.
Only the biological/genetic parents can pass along ancestry, physical and mental traits, blood type, and medical and genetic diseases. They are also who the child will match with as “parent” on any DNA test. A surrogate who carries and delivers a child with someone else’s egg is also not the biological/genetic parent — and will not be related via DNA, either.
The person who carries and delivers a baby, whether it’s the mother or a surrogate, is not the biological/genetic mother if she didn’t contribute the egg. Her ancestry, physical traits, and biological predispositions are not passed along to the child.
I was stunned this past January when I was on a panel at an egg clinic in Denver and a mother in the audience stood up to share that because her daughter so closely resembled her, she simply didn’t believe the science. She asked how I might explain the close physical resemblance if her genetics were not passed along to her egg-donor-conceived daughter. Closely watching the clinic staff, waiting for them to gently step in and educate the woman, I was shocked when no one uttered a word. It was then that I understood how some of these mothers could so easily slip into denial, thinking that they were magically genetically related to their children even though their eggs were not used.
I know this discussion is often frustrating for donor-conceived people to hear, as they desire and expect honest communication from their parents. In the DSR Facebook discussion, one offspring explained exactly why proper terminology is so important for all donor families:
“As a DC person, the amount of answers here trying to twist language around to make DC [donor-conceived] kids somehow biologically related to their non-bio parents is making my head hurt. The definition of biological parent is the person who supplied your DNA. That’s what it means. And in certain medical situations, accurate information about this and access to people you are related to can mean life or death, so twisting this around to support your own emotional needs is deeply selfish. If you were really all as ok with the DC process as you claim, you would be ok describing it as what it is, which is a very early form of adoption. There IS a legal process of transferring child custody over from the bio parent to the recipient parent, that’s what all those forms you filled out at the fertility clinic were.
Truly supporting your DC children means not stigmatizing, twisting, and being in denial about the basic facts, which includes not being so secretly bothered by the lack of genetic connection that you try to usurp and manipulate language to muddy and conceal the basic scientific realities of our bodies.”
“Parent” is both a noun (sperm and egg contributors) and a verb (parenting by the parents who raise you and who love you), so shying away from accuracy only indicates that there is something still unsettling about the reality that you don’t have a biological connection to your child. Not having a biological connection to your child in no way diminishes your role as a parent or the importance of carrying and delivering your baby. If you are a non-bio parent of a donor-conceived child it’s important that you work through any grief or sadness you may have about not having that biological connection with your child before you start having conversations with your child about the way they were conceived, which ideally should be when they’re pre-verbal.
Ultimately, this discussion is about the children. We would never want donor children to be afraid to use accurate terminology for fear of hurting their parents. It’s important that as we talk to our children we use honest and accurate terminology and give them the freedom to try on and use whatever terms they’re comfortable with. We want our children to know that they’re a special and unique combination of both nature and nurture and how, through the use of a donor or donors, they came to be.