By admin on November 11, 2021
I am sometimes asked about the DSR’s Success Story page by people noting that those are the “good” experiences but want to hear about the “bad” experiences. After 21 years of facilitating more than 22,500 half-sibling (and donor) connections, I find this odd.

For me, it’s like asking me to tell you about a “bad” experience when a child met his first cousins for the first time. Or when two people in a family don’t get along, see eye to eye, or who don’t want to spend time with each other. Is this a “bad” experience”? Or just a part of the family experience?

Do half-siblings have to adore each other and share common interests in order to classify the meeting or relationship as a success? I think not. I think having access and being able to know these first-degree genetic relatives is their right, but bonding with them and defining these new relationships is then their choice. And for young children raised knowing their half-siblings, there is just no issue. These people are just their family members. Like other relatives, the ones they live nearest to, are most like-minded with, and share the most common interests with are the ones they are more likely to spend time with.

Some parents are concerned that a child under 18 might not be mature enough to handle this type of situation and therefore don’t tell their children about known half-siblings, wanting to wait until they are “old enough”. Some parents delay by waiting for their child to actually ask about half-siblings. We don’t wait for our children to be mature enough or to ask about their cousins or grandparents.  Children take the meeting of half-siblings in stride, as it is no different than meeting any other relative, some of them they like more than others. Some they would rather spend time with, others — not so much. It’s very simple.

Usually, it’s the parents who are much more likely to fret about how to define it all. When the parents move forward with meetings in a steady, joyful, and confident manner, the kids are likely to also view the meetings as positive. When parents interject their own fears or worries, or thoughts that these half-siblings are not legitimate “family”, this can throw unnecessary angst into the connections for the kids.

DNA Matters. Donor-conceived people have so much to learn about themselves from what they share with their half-siblings, as medical and psychological issues and abilities are often shared.  These kids all received around 50% of their DNA from the same person, and while sharing DNA isn’t the only way to make a family, it is one way that shouldn’t be denied. Half-sibling connections can be celebrated as expanding your family can be a wonderful and enriching experience.

By admin on November 08, 2021

Many people who are considering having a child face the possibility/probability of not being genetically related to that child. Whether you’re a man, woman, or couple dealing with infertility or a genetic abnormality that makes it impossible to have a biological child, or you’re an LGBTQ couple, and you choose to use donor eggs or sperm, someone in your family equation will be in the position of being the non-bio parent.

Over the years, here at the Donor Sibling Registry, we have learned that many non-biological moms and dads have not been adequately counseled or educated before using donor conception to create their families. It is vital that these parents deal with any grief and shame that they may have around their own infertility, work through any emotions they might be experiencing from this lack of biological connection, and educate themselves all about the needs and issues their future child might have. If this doesn’t happen, there’s a good chance that this parent will pass their discomfort and/or shame along to the child as the shame of being donor-conceived.

Historically, and even now, couples or individuals choose an anonymous donor as a way to try to ignore the fact that the donor is a real person. Choosing an anonymous donor can feel less fearful because they might think that the chances of their children being curious about, searching for, or finding their biological parent will not be as high. But since 2005, anonymity can't be promised or expected as anyone can be found via DNA testing.

Unfortunately, many parents still try to withhold the truth from their children. Family secrets are toxic, and these parents, expecting honesty from their children, owe their children the same. In these families, all too often the “secret” hovers just beneath the surface, creating distance between family members who don’t have a clue as to why and where this feeling of distance is coming from. It's only a matter of time before all donor-conceived people learn or figure out the truth. Learning this truth as an older child or as an adult can be devastating.

Parents who do disclose the truth can still pass along their insecurities and fears with regards to their child having any type of curiosity about, and wishing to connect with their unknown biological family. Never speaking about it again, or giving the child the clear message that it's an uncomfortable subject and not welcome to be discussed can have dire circumstances, for the child and for the whole family dynamic. Not making peace with your lack of biological connection may create discourse and guilt within your child, when any natural feelings of curiosity arise within them.

Sometimes donor-conceived people learn or figure out the truth, but they still shoulder the secret. Our research and anecdotal information give evidence that quite often, adult donor offspring have found out that they were donor-conceived, but we’re afraid to tell their non-bio moms or dads that they knew for fear of hurting them. In this case, families create a double secret, as the children themselves are also struggling to keep the “secret” that the parents have shouldered for so long. These donor-conceived people feel acutely aware that the methodology of their conception causes pain to their parent(s), and therefore willingly accept the weight of this pain to carry themselves. This only enforces the idea that the way they were created is somehow shameful and should be kept secret.

These issues come up for both straight couples and LGBT families. We hear all too often that the non-bio mom in an LGBTQ family, for example, is afraid of a child reaching out to half-siblings and/or their donor, saying, “biology doesn’t make a family.” Their unresolved discomfort or sadness is about not being able to have a genetic connection to their child can cause great instability and insecurity within their nuclear family. All too often this is expressed as disappointment or anger at a curious child, so that the child then feels a great sense of betrayal, even just thinking about the unknown people they are genetically related to. This can be paralyzing to the donor offspring who have a longing or desire to explore connections with their unknown relatives and actually make efforts to do so. 

In the beginning, we as parents make all the choices about how our child will come into the world. These are choices that will affect our children for their entire lives. At some point, it isn’t about us, or what makes us most comfortable. We need to be asking, “What is in the best interests of this child to be born?” Reading research and testimonials from donor-conceived people should be required before making any decisions.
What may be just a “donated cell” to the parent often means a lot more to a donor-conceived person. We as parents need to be very careful not to put our own fears and biases onto our children and allow them to process for themselves the meaning of “family” as they mature. This is not about our fears as parents. We brought these children into the world using a methodology that cut them off from one-half of their genetic background. We owe it to them to honor and respect any desires they have to seek out this unknown or “invisible” family and offer to walk by their sides as they make their donor family connections.

Sometimes, when connections are made between donor-conceived people and their half-siblings and/or donors, some non-biological parents (or their spouses) have responded with fear, by saying, “those people are NOT your family.” Although they are not your genetic family as the parent, they are indeed your child’s family. Fearing that, and insisting that it isn’t so, just won’t make the genetic connection invalid. Negating the importance of any genetic connection is absurd. Let’s think about the day that our children were born. As parents, we didn’t just go into the hospital nursery and choose any baby to take home. No, we wanted the baby that was biologically ours. Biology does indeed matter. And although it is not the only way to form a family, it has been throughout the ages, the most common way that humans have defined family.  Even if you don’t feel any connection to your child’s newfound relatives, it is your job to do your best to be open, warm, and accepting. Having your complete acceptance will allow your child to fully explore and define these new relationships.

In our published research of 244 non-biological parents, there was a difference between non-biological mothers and fathers over whether they were interested in meeting their child’s other biological parent, the donor.  73.1% of the women who utilized donor eggs indicated that they would like to meet the donor while only 45.2% of the men (who utilized donor sperm) indicated interest.  Adequate counseling and education and working through one’s own grief and fear as well as understanding our children’s desire to know about their ancestry, medical background, and roots before pregnancy would save a lot of donor families from heartache. Making peace with the concept of not being genetically related to your children is essential to creating an honest, respectful, and healthy family with strong bonds. Exploring what it means to be a parent and acknowledging that our children are a wonderful blend of nature and nurture - they are deeply influenced by the parents that love and raise them and also by the parents that contribute 50% of the DNA. Understanding and respecting the fact that knowing where and who one comes from is an essential ingredient in the formation of a donor-conceived child’s current and future identity is, therefore, a vital step toward having a healthy family.

At the Donor Sibling Registry, we celebrate all of these family connections! If you (or your partner) need some support, please contact me for a phone/video consult.

By admin on October 28, 2021

How does answering to private equity owners and lobbying in the world of gamete donation encourage a responsible and ethical industry? 

What’s the issue with private equity firms owning the gamete brokers: the sperm banks or egg clinics/banks?  When the main focus is profit, all too often these gamete brokers can be deceptive, both by the omission of important information they supply to all stakeholders and by blatantly lying.*   At the same time, many practitioners in the reproductive medicine field look to the American Society of Reproductive Medicine (ASRM) and the Society for Assisted Reproductive Technologies (SART) to set policy and keep an ethical eye on the industry. Infertile families look to Resolve to give accurate and important information about infertility, including information about creating a family with sperm or egg donation.  What's the problem with these 501(c)3 organizations lobbying when they are supposedly focused on educating medical professionals and the public about reproductive medicine and donor conception? When it comes to donor conception, we need to look more closely at what these entities are actually lobbying for and against. Are they deliberately lobbying against making the industry more ethical and responsible for those who sell (sperm and egg donors), those who buy (parents), and for those who are created from these brokered gametes because it would be more costly to the gamete brokers (the sperm banks and egg clinics/banks)?

When private equity firms either dictate or directly influence reproductive healthcare policy, and if the main goal is profit, then best practice and adequate education and care for the parents/patients, sperm/egg sellers, and for the donor-conceived people is pushed off of the agenda. A California Cryobank representative told me that they can’t establish the policies that would better educate parents and donors and better serve donor-conceived people because it would cut into their profits and because they are now owned by a private equity firm, profit is their main concern. (I should note that it sure looked like profit was their main concern even before they were bought by GI Partners as they had decades to implement more responsible and ethical policies.) The ASRM, in their 2021-2025 Strategic Plan Development, acknowledges the potential for negative consequences with private equity funding, "There is a risk that private equity acquisitions of medical practices will ramp up, leading to some negative consequences for physicians (particularly younger ones) and lower quality care for patients. Very hard to know how to prevent the negative consequences." But they offer no guidance or recommendations.

The ASRM's Strategic Plan for 2021-2025 also states that they want to "Increase federal and state lobbying regarding reproductive health and reproductive care critical to the diverse populations of patients and the providers who deliver their care." But they have made sure, via their lack of acknowledgment and recommendations, and via years of lobbying, that issues like mandating accurate record-keeping and tracking/limiting the numbers of children born to any one donor don’t become regulated. Resolve, the organization that claims to support infertile families by "empowering them with knowledge" and who also spends thousands each year on lobbying, has a dearth of information about the children that everyone is working so hard to create, along with many other crucial issues that affect all stakeholders in the donor family.

You would think that people in the reproductive medicine industry would understand the importance of these things as they relate to the health and well-being of all donors, parents, and donor-conceived people, and not actively lobby to keep the industry from becoming more responsible, ethical, and safe. If large amounts of industry lobbying money can go to protect the reproductive rights of parents, why is there no money allocated to lobbying for the rights of the resulting donor-conceived people? The disconnect is staggering.

For the most part, the ASRM ignores the Donor Sibling Registry and the importance of our work, research, and the more than 21,300 donor-conceived people and donors that we've connected. But sometimes they just can’t help themselves. Dr. Robert Brzyski, a former chairman of the ethics committee at the ASRM publicly questioned my reporting of half-sibling groups over 100, calling it a “stretch”. At the time I had good reason to believe that he was very aware of these large groups of half-siblings. I then went to the NY Times. (This group and other half-sibling groups are now well over 200 even though many of the parents and donors were promised no more than 10 or 20). Dr. Adamson, who was at the time president of the ASRM (and a former Resolve board member) said to me, “Registries can be discriminating...a lot of traditionally conceived children don’t know their parentage, so why should gamete donor children?” Sean Tipton, the ASRM lobbyist once said, “I don’t draw any conclusions from the Donor Sibling Registry. I don’t know if there is any counterpart organization for happy children of sperm donors.” These comments not only show the ASRM's resistance to acknowledge the importance of educating, connecting, and supporting donor families, but also the ignorance of ASRM leaders, the folks that the entire reproductive medicine industry looks to for guidance. 

* I get it: how many sperm donors would there be if they were told that they might end up with 100 or more than 200 biological children that could easily find them via DNA testing?
Or, how many parents would buy gametes from a place that doesn't update their donor's medical health record or share important medical and genetic information among families?
84% of 164 surveyed sperm donors were never contacted by the sperm bank for a medical update (most sperm banks promise yearly updates) while 23% indicated that they or a
family member had a medical issue that would be important to share. “As a donor, I updated my medical records between donations. They did not pass those updates on to previous
donations NOR donations that came after those updates.”

In 2009 97.4% of 155 surveyed egg donors were never contacted by their clinic for a medical update while 34.2% said they had a medical issue that would be important to share.

In 2021, still, 94.3% of our 345 surveyed egg donors reported that they had never been contacted for a medical update while 25% had medical issues they felt were important to share with families.

A donor-conceived person [Fairfax Cryobank] reported yesterday: 

The mothers [in our half-sibling group] received a letter in 2003 notifying them that the sale of our donor’s sperm was ceased due to a genetic mutation in an offspring. As of October 2021, there are approximately 72 siblings that we were able to locate and at least five of my donor siblings were born in the years 2005-2014. If the sale of this defective sperm was halted in 2003, that must mean they either purchased it prior to 2003, or they are donor siblings in the same family using the same donor, right? Well, you’d be WRONG. I check his donor profile quite often, actually. And, as of February of 2021, earlier this year, I happened to be on his profile [on the Fairfax Cryobank website] and I WAS ABLE TO ADD A VIAL OF HIS SPERM TO MY CART AND PROCEED TO CHECK OUT.