Donor Sibling Registry

Gamete Brokers and the Backfire Effect.

By admin on September 15, 2021

There's a well-documented phenomenon in psychology called the "backfire effect." It’s the tendency of some people to resist accepting evidence that conflicts with their beliefs. The effect is demonstrated when people presented with conflicting data and information become even more convinced of their original beliefs rather than questioning them. This helps to explain why gamete brokers often struggle with changing their minds in light of new evidence presented to them about donor families.

Once something is added to your collection of beliefs, you protect it from harm. You do this instinctively and unconsciously when confronted with attitude-inconsistent information. Just as confirmation bias shields you when you actively seek information, the backfire effect defends you when the information seeks you, when it blindsides you. Coming or going, you stick to your beliefs instead of questioning them. When someone tries to correct you, tries to dilute your misconceptions, it backfires and strengthens those misconceptions instead. Over time, the backfire effect makes you less skeptical of those things that allow you to continue seeing your beliefs and attitudes as true and proper. So, the more people are confronted with facts at odds with their opinions, the stronger they cling to those opinions.

This phenomenon is what I come up against all the time when dialoguing with people in the reproductive medicine industry. All too often the Donor Sibling Registry’s decades of anecdotal data from more than 75,000 people, and research studies with 26 published papers in peer-reviewed academic journals are dismissed, negated, or challenged. Instead of listening, the evidence is ignored or explained as somehow biased or wrong. I get it.

If the industry acknowledged the new information and data, they would then need to honestly address their own policies and make changes that would negatively affect their businesses in a financial manner:

1. Keeping and updating records costs money. Reporting births is voluntary, so sperm banks do not have accurate records of the children born from any one donor and they lose track of donors. One mom says, "If the sperm bank [CCB] can't find the donor 3 years down the road when my sons were speech delayed or 6 years down the road when my son had cancer, why do they claim they can find him after 18 years??”

2. Keeping promises of updating and sharing medical information is costly and might also result in costly lawsuits.

3. Keeping promises of limits on numbers of offspring would be costly as selling fewer vials of a single donor would also affect their net profit.
4. Properly educating and counseling all prospective parents and donors would also be costly. Also, if donors knew that they could end up with 100-200 kids, many would never donate.

This is the false narrative and only argument that comes my way from the industry (eg., from the American Society of Reproduction's spokesperson Sean Tipton and from the sperm banks) when proposing some oversight or regulation:

Any oversight or regulation of the gamete donation industry will threaten the “reproductive rights” of parents. Parents are told, If there is regulation or oversight in our industry, you won’t be able to have the baby you so desperately desire! In reality, the oversight and accountability that we propose is not about challenging anyone's "reproductive rights". This is a different conversation about running a more ethical and responsible gamete selling industry by mandating accurate record-keeping to know which families have children from any one donor, keeping accurate records on all medical issues reported, mandating comprehensive medical and genetic testing of donors, mandating the updating and sharing of medical information amongst families and donors, limiting the number of kids born to any single donor, and listening to the experiences and recommendations of donor-conceived people.

Many in the industry know that the information I present is accurate as they too hear from the families, but consciously choose to ignore or dispute it. But, I have talked with some people in the industry who are so invested in "helping families" that it's hard or even impossible for them to consider that their policies might actually be hurting people. I get it.

But the only ethical and responsible way forward for the industry that is helping to create human life is by honestly listening to and considering the parents', donors', and most importantly the donor-conceived peoples' experiences in the years and the decades after the gametes are sold and purchased when setting policy.

Sperm Banks, Egg Clinics, Medical Updates, & Emergencies

By admin on September 09, 2021

Do sperm banks and egg clinics reach out to donors regularly/annually to update their medical information, like so many promise to do? Nope.

Do they keep accurate records on the children born from any one donor, in case of a medical emergency? Nope.

We recently had another (California Cryobank) sperm donor frantically trying to find/contact the families who had children from his donations because of his recent diagnosis of HCM (Hypertrophic Cardiomyopathy), a serious and genetic heart condition. He was never contacted by California Cryobank for a medical update and because the sperm bank has no accurate record-keeping on all of the children born from his donations, there will be no way to notify all the families that these children need immediate medical attention.

From the donor:
"The condition is 1) genetic, with dominant inheritance, 2) serious, resulting in sudden death in a small but significant portion of affected individuals (my DCP matches are entering the highest risk 15-24 age group), 3) silent - sudden death is often the first "symptom", so the condition is unlikely to be diagnosed from earlier, milder symptoms, and 4) proper medical management reduces the risk of death to nearly zero. Because of those factors, medical guidelines call for immediate screening of first-degree relatives.

This article in JAMA is about another donor with HCM, where sadly one of the children had died.

From our published research on sperm and egg donors:

2013: 84% of 164 surveyed sperm donors have never been contacted by their clinic(s) for medical updates while more than 23% of the donors felt that they had medical/genetic issues that would be important to share with families. ⁠While 16% had had a follow-up, most of these were due to advising that a child had been born that had a medical condition with the facility seeking further information from the donor, This would seem to suggest that follow-up contact tends to be on the basis of a medical issue which has emerged in the child and with a request for more information.

⁠2009: 96% of 155 egg donors have never been contacted by their clinic(s) for medical updates while 31% of the donors felt they had medical/genetic issues that would be important to share with families.

2021: 94.3% of 345 surveyed egg donors were never contacted for a medical update while 24.4% indicated that they did have a medical issue that would be important to share with families.
47.7% attempted to share this information and 62% felt that the clinic was "dismissive".

Hundreds of medical issues have been reported publicly and via the Donor Sibling Registry.

Here is a partial list of genetic illnesses and disorders reported by donors and recipient families.

One sperm bank currently has this posted on their website: "All donors are asked to inform us of changes in their personal or family medical histories that occur." Yet over the years, most families were told that their sperm bank collected annual medical updates from donors. All too frequently we hear from donors and families who were not able to successfully report share urgent medical information:

I reported to the sperm bank that my child was diagnosed with cancer (lymphoma/leukemia) the same week of his diagnosis and provided proof, so they could report it back to the donor and to the other families who had used the same donor. Almost two years later, none of the 11 families I am in contact with have been notified about my son's condition.

My older son is donor-conceived (sperm). The cryo bank (CCB) did discover that the donor seemed to have a genetic disorder (he reported it to them). This was after my son was born. CCB did not attempt to contact me to tell me. I only found out when I called them to see if I might be able to contact my donor. Otherwise, I would never have known. I also contacted CCB when my son became psychotic at age 14; they did not contact his half-sister and let her mom know.

Over the years a couple families in our DC family reported to Fairfax a high rate (1 in 5) of neurological disorders in the group. I called Fairfax a couple of days ago and the genetics counselor claims that no one has called in.

Here are just a few more reports from a 2017 FDA Citizen's Petition:

I used an anonymous donor to conceive my son in 1992. When my son was 15 I was able to locate the donor and made contact, but he never responded. While researching his family tree, his sister made contact to tell me the family suffered from a genetic defect of the aortic root, resulting in aortic aneurysms in her mother and three brothers, including the donor who suffered an aortic dissection in 2007. He
survived, but he never reported this genetic defect to the three banks where he donated. It is autosomally inherited, meaning that 50% of all children from this donor will inherit this defect. It is a silent killer. Most people don't know there is a problem until the aorta dissects, resulting in death 80% of the time. After having my son checked out at Johns-Hopkins, he also had an aortic aneurysm growing in his chest at the age of 17. It was surgically repaired, and he has to be followed with annual echocardiograms for the rest of his life. If I hadn't located the donor, and his sister hadn't located me, I would never have known about this potentially deadly genetic defect. I contacted all three sperm banks, but none of them would take my word for it, even though I had the donor's name and my son's doctor records.

We used Idant, which did not do any psychological screening. By the donor's own admission when meeting him 20 years later he suffers from bipolar disorder and was hospitalized as a teenager. My daughter suffers from bipolar disorder a highly genetic disorder. One of his other offspring completed suicide when she was eighteen. Another was in residential treatment as a teenager and then prison as an adult. He donated twice a week for two years.

My Fairfax ID donor committed suicide in 2013. I learned of his death one week after the birth of my second child in 2016. That means I posthumously conceived one or both of my children with a Fairfax Cryobank donor. I did not consent to this, and I do not know if the donor would have consented to this.

I am a lawyer who has, unfortunately, had to represent too many couples who had a child born with donor sperm that was not tested for common genetic diseases, even though the cryobanks represented that such genetic testing was performed.

I'm a carrier of cystic fibrosis, and my mother is not. That means my donor was a carrier of cystic fibrosis and had passed the gene on to me.

I Want To Tell My Child That They Are Donor-Conceived, But My Spouse Doesn't Want Me To.

By admin on September 05, 2021

It is very difficult to feel torn between the needs of different members of your family. You love them both and want to do what is best for each of them, even when those needs seem to be at odds. Up until this point, your family has "protected the privacy" of the donor and "maintained the secret" from your child. The difference in opinion you and your spouse now have can be a source of conflict in your marriage.

In some families, spouses place a different importance on the facts of conception. However, most people who have not disclosed have done so in order to protect their spouses. Infertility brings with it a social stigma and, in many cases, shame. Non-bio parents often fear that their children will feel differently about them once they learn that there is no genetic connection between them. Speak with your spouse lovingly and respectfully about their feelings and concerns. We also recommend that your spouse take a good look at whether or not they have sufficiently dealt with the grief of their own infertility and not being able to give your child a genetic connection. Many people do not adequately process through this grief before their child is born, and then have difficulty not passing this unresolved grief, in some way, to their children. When this grief is not verbalized, validated, and fully processed by both parents, every member of the family can suffer.

Some parents are also fearful that their kids might look at them differently and that their parenting might come under much more scrutiny. They worry that they may not be perfect parents and if their kids know that there isn't a genetic bond, that they will view them as less of a parent. It's important for these men to know that all of us worry about our parenting at some point! Until these issues are addressed sufficiently, your husband is less likely to change his mind about disclosure.

Parents will also need to put aside their own feelings of guilt. If parents are feeling guilty about holding "the secret," they may be incapable of dropping their defenses to be in an open emotional state to honor and acknowledge their child's pain.

The two of you have to weigh your spouse’s strong feelings against the potential problems you will encounter from withholding the information from your child. When your child finds out the truth (and they will), there is a great likelihood that they will be angry at having the information withheld until now. This feeling will be directed toward both parents. Your ongoing conversations with your spouse must focus on your child’s needs.

My Spouse Doesn’t Want to Connect With Our Child’s Genetic Relatives. What Should I Do?

In same-sex parent families where donor gametes were was used to conceive, the non-biological parent may also feel insecure about their lack of genetic connection to their child. While the facts surrounding the child’s conception are more likely to be shared in that family arrangement, the non-biological parent may, like the non-bio heterosexual parent, be resistant to searching for a donor who might threaten their role in the two-parent structure. They may even feel threatened by their child’s half-siblings and not allow contact to be made with them. It’s important for this parent to know that their child’s genetic relatives are no threat to them and that it’s in the best interests of their child to acknowledge the importance of exploring these new family connections.

Some parents may feel the need to minimize the genetic connection between their child and the donor. If a child grows up in a family where half of their genetic, ancestral, and medical background is minimized or negated, they can feel a lot of guilt if and when they do become curious. Parents need to be very careful not to put their own biases onto children and allow them to process and define these familial connections for themselves as they mature. We don’t want our children to feel like they are betraying their parents by having normal feelings of curiosity about their unknown genetic family and we don’t want our children to wonder why they were not allowed to know their close genetic relatives while growing up.