By admin on October 21, 2021

We can all educate ourselves about the importance of terminology when dealing with sensitive family groups and communities, including in the world where sperm and eggs are sold and bought.  But it's tricky.

For starters....the person who sold their sperm or eggs never actually “donated” anything. A donor-conceived child didn't have anything “donated” to them, so really, they do not have a donor.

Terminology can be a real hot button as it indicates the way that we define our relationships.  


It's an important factor in communication as it gives context to the content of our conversations. That's why we always recommend using accurate terminology for donor families. Usually, we call the person who sold their sperm or eggs the donor.  This person is actually the biological mother, biological father, or biological parent, as they contributed around 50% of the DNA to create the child. The word parent can be used as both a noun and a verb, and while donors are the biological parents (noun) of a donor-conceived child, they are not parents (verb), as they do not actually raise or actively parent the child.

Many parents view the gamete sellers as merely contributing a "piece of genetic material" or "a donated cell", but to the donor-conceived person, it's oftentimes so much more than that. It's one-half of their identity: their ancestry, their family medical history, and their very close genetic relatives.  Donor/biological parent is a good way to clarify which type of biological parent you're referencing, not the one who raised you, but the one who gave you half of their DNA via the sperm or egg donation process. They are the people that sold their gametes to a facility, who in turn sold them to the parents.


Here is how 1,683 surveyed sperm donor-conceived people refer to/describe the "donor".  42.58% of the DCP who had LGBTQ parents included the words father or dad while 66.83% of DCP with heterosexual parents used those words to describe the person from whom they received 50% of their DNA.



                                 Donor-conceived people with LGBTQ parents:                                                                                       Donor-conceived people with heterosexual parents:




Only 22% of 1700 surveyed sperm donor recipients (the mothers) used the words father or dad when describing the person who contributed 50% of their child's DNA.


Other terminology hot spots are the words we use for donor-conceived people: like offspring, or donor babies for very young children.
Others created with the same donor are called half-siblings, donor siblings, siblings, or even diblings (although that term is not favored by many adult donor-conceived people).
For the person that sold their gametes, they might have children that they are raising, but also children created from their gametes who might be their donor children or offspring.

Some donor-conceived people feel very strongly about not using some of these terms, while others are fine with it. It all comes down to how you personally define family.
I find that no matter which term you use, you're probably offending someone.  

I guess we're all still working it out.



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. 







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.
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.

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.