The DSR has prepared several reports on the medical issues pertaining to donor families. Also included are articles that deal with medical and genetic issues. At the bottom of the page is a list of some of the medical and genetic issues reported by DSR members.

Medical issues can be a big problem in donor-conceived populations, especially when there is no regulation regarding the number of offspring and no universal standards for updating medical information. Report all births to your sperm bank/clinic!

DSR members have reported a wide variety of health and genetic issues, as well as clinics' refusal to update or share medical information. Here are some of the messages we've received.

2021: Another former sperm donor [CCB] reports HCM (Hypertrophic Cardiomyopathy) a serious and genetic heart condition. Like most donors (84%), he was never contacted by California Cryobank for any medical updates, like they promise to do.  “I’ve been trying to get information on a recent medical diagnosis through to the DCPs & parents I'm matched with.  The diagnosis is a poster child for "must-know" family medical information.  That is, 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.” Sperm Banks, Egg Clinics, Medical Updates, & Emergencies

2019: From a parent: "I was contacted by TSBC when my son was about 3, indicating 2 half-siblings had been diagnosed with Tourette’s, Tic Disorder, and ASD. At the time, we were uncertain of my son's diagnosis but clearly, there was something going on. Fast forward a couple of years and he was diagnosed with high functioning ASD, ADHD, and later bipolar disorder. My daughter had sensory processing disorder. We have been in contact with 3 half-siblings, two of which have mental health and neurological challenges. The one half-sibling male, one year older than my son, has the exact same diagnosis as my son."

2019: From a parent: "My son has Asperger's, as do 4 of the 8 children we have made contact with. Worse, our donor has a genetic defect that results in aortic aneurysms and dissection. Half of his 33 living children will inherit the same. My son did; he had open-heart surgery at 17. I know it is a crapshoot when you rely on a stranger’s DNA, but there needs to be tighter regulation in the sperm banking industry."

2019: From a parent: "3 of my twins' 1/2 siblings tested positive for TS (tuberous sclerosis). This was a blessing and a curse. It brought previously unknown parents into our sibling group (or parents of siblings) but it also showed all of us the dark side of donor banks. Through growing and getting to know other families, we found out that there are a few kids that were diagnosed ASD, including my twins. The myriad of emotions I went through ... like "I did not sign up for this! This is WHY I went through a cryobank to get genetic history and know health issues" etc. It turned out that the donor was a mosiac carrier for TS. I am unsure about the rest but WITH the ASD diagnosis ... my twins also have a genetic deletion. So I am wondering if there are others and the sibling parents either just don't know or are not coming forward."

2018: From a parent: "I was wondering if you could help with the following. Suppose a parent has a donor child, diagnosed with autism spectrum disorder. Then, one would find out the identity of a sperm donor (when the donor child is still young), only to discover that the donor has autism too, and apparently in a more serious way than the child (meaning, it should have been rather obvious for the donor bank when the donor offered his services). Can you hold a donor bank [California Cryobank] liable? Or are they under any legal obligation to refuse potential donors with autism? What do you need as proof, in order to start a case?"

2018: From a former sperm donor: "I received an email today from the birth mother of one of my offspring, a first! What a thrill! She chose me as a donor 25 or so years ago because I indicated that I would be open to contact. When her son was 16, he was diagnosed with MS. They learned there was a genetic link. She contacted the center and was told they were not allowed to contact me and would not give her any info. They even denied having a sperm donor program. She finally convinced them to send her the original information she had received to choose a donor. It was like a big secret they did not want her to know. I was never contacted by the clinic [Cryobiology], even though I had provided them with updated contact info over the years!"

2018: From a former egg donor: "Some fellow egg donors in an ED group admitted to lying and/or purposefully withholding information on their applications so they could be accepted. One ED even told another potential ED how many days to be off her meds so she could clear any screening done. It's not just sperm donors who cheat to make a buck. There needs to be far more accountability."

2017: "It has been proven that the siblings have a 50 percent chance of inheriting a rare medical condition from the donor. The death rate is about 20% per year and first sign of the condition is death at sleep or rest. We are looking at the period of 1978-1985 as the period of the donation for the donor. Some of the period between 1980-1983 might have been in New York State. We have been unable to get further information from the University of Florida, Shands, the donor, or from the attending physician concerning more concrete information. We know of three siblings and each carry the gene. There are also two children by one of the siblings that carry the gene."

2017: "I have a genetic blood disorder called Prothrombin Gene Mutation, thought to be passed down from my sperm donor."

2016: "I had genetic testing on my 2 boys that were conceived from the same donor. They inherited a mutation on a gene that is known to cause autism and Rhett syndrome. Both of my boys are autistic. One of their donor half-siblings who is also autistic just received genetic results and she also inherited the same mutation in the same exact spot in the genome as both my boys."

2016: "I was an egg donor over 20 years ago ... I called the office where I donated and let them know about my son having ADHD, anxety, bipolar, etc. so they could let the offsprings' family know. I am assuming, because it was 100% confidential ... they really didn't seem like they were interested or were going to pass the information on."

2016: "I donated my eggs four different times at Genetics & IVF Institute in Fairfax, VA in the 90s/early 00s. Since then I discovered I carry a gene which means I'm at a much higher risk for getting several types of cancer. Since then I've tried to contact Genetics & IVF Institute so that they can relay this information to my offspring (they have a 50/50 chance of inheriting it) but they were not interested and it was obvious that they were not going to inform the families despite the fact that early screening could potentially save these children's lives. I've recently turned 42 years old and I was just told this week that I most likely have ovarian cancer (this will be confirmed through pathology after surgery) and that I will need my ovary removed ASAP. I don't know if this is because of donating my eggs when I was younger or because of my family history. It's very upsetting either way."

2016: "I have been a member of the registry since 2004. I donated eggs in 97, 98, and 99. I am concerned about the children that may have resulted from those cycles. I have been diagnosed with Autosomal Dominant Polycystic Kidney Disease (ADPKD). I have 4 children, 2 have the disease. One does not and the youngest has not yet been tested. He is 15 and conceived from the cycle in 99. I kept 3 eggs and donated 20. I contacted the clinic immediately after I found out. They completely accepted the information but did not give me any real Indication that they would relay the information. I lost my mom in 2005 to aneurysm as a result of the disease. My niece had aneurysm surgery 4 years ago. She was the youngest diagnosed with serious complications. My sisters are both in renal failure waiting for transplants."

2016: "The only way we found about a serious genetic eye condition was because we had already found a large group of donor siblings and upon joining the group, the parent of the child with the condition contacted me and told explained the condition and the importance of having my son screened no later than 3 years of age. It is a very rare but treatable condition. It turned out my son has this condition and had we not had that info my son would most likely ended up having serious vision problems due to it being caught too late. The bank we used had this information but it was not shared supposedly because only one donor sib at the time had it and there was only a 12.5% chance that other donor sibs would have it ... regardless, the info to have my son screened saved his vision and I will forever be grateful that I have the connection I have with the 12 other donor sib families!"

2016: "I am 'donor' conceived. I just found out who my bio father was. Sadly, he died 7 months ago from stage 4 renal cancer. He was only 49 years old. Also, there is some bad history of suicide and bipolar disorder in his family. I called the cryobank, Reproductive Resources in Metairie, LA. I told them his medical information and that they must immediately inform all other offspring of this information. They said they couldn't do that. What can I do? This could be a life or death situation. To withhold this information is unethical and criminal."

2015: "I am an ovum donor and I have Ehlers-Danlos Syndrome types 2 and 3, and my two children do as well. This was only discovered in my 30s. I so wish I could tell other offspring." [From the Mayo Clinic: "If you have the most common varieties of Ehlers-Danlos syndrome, there's a 50 percent chance that you'll pass on the gene to each of your children."]

2015: A mom with a very sick child who used California Cryobank: "I contacted CCB and they were adamant about not contacting the donor or providing me with information about him, going as far as saying that they discouraged contact among donor families and refusing to recommend the Donor Sibling Registry (DSR) to a donor." Read her full story here.

2015: "One of my children was diagnosed with a rare and severe type of Lymphoma/Leukemia (Precursor T-cell Lymphoma/Leukemia), which spread over his neck, throat, lungs, heart, inguinal area, blood, and bone marrow. He has been receiving intense chemotherapies."

2014: "My children have a disease called cavernous malformation disease: gene is called CCM1 (this is what all [the donor's] offspring & he should be tested for). All three who have it, have active brain bleeds, and my 8 year old has had 2 strokes, now has epilepsy from the brain damage, and one child is expected to go blind eventually. Many people live like a ticking time bomb and never know what they have with this condition so I want other families to know! Some don't get it, some are asymptomatic, BUT if they get help at a young age it could make the difference between life and death. I do not have it, so all our geneticists and teams of doctors have concluded it is from this donor. He in fact deserves to know he has it, even if he has no active issues. I just want families of California Cryobank donor 3541 to know that their children may have it, or it may be an answer to some of them who are struggling for knowledge like we did for 2 years! It may help us as well to see if any sibs have it, and where/how they are progressing!"

2014: "I am the parent of two children who were born with a sperm donor. They are both in their early 30s. In the past 6 weeks we have discovered that they were born with a bad gene and they have a rare heart disease. With this gene, a person just drops dead with no warning. In checking my grandchildren, two of them, under the age of 10, carry the gene. My oldest child and the youngest grandchild have had surgery. My younger child is going to have a baby in December and that grandchild will have a 50 percent chance of getting the disease. Still testing etc to see what that treatment will be. I have had DNA testing done and I do not carry the gene. Doctors said it had to come from the donor."

2012: Child born with Cystic Fibrosis from New England Cryogenic Center (NECC). Related CBS story: Parents Sue Cryogenic Center Over Child’s Cystic Fibrosis  

2012: At least nine children (Nordic Cryobank & California Cryobank) who were conceived with the sperm of a man with a genetically inherited disorder Neurofibromatosis (NF1 or von Recklinghausen disease). Related Human Reproduction case report: Gonosomal mosaicism for an NF1 deletion in a sperm donor: evidence of the need for coordinated, long-term communication of health information among relevant parties 

2011: The Guardian: Donor-conception: 'I'd got to the bottom of a secret' 

2009: London Women’s Clinic used chromosomally abnormal donor sperm to treat 11 women, including a couple who had to destroy 22 embryos created over a year of treatment. The Independent and BioNews.

2009: A child conceived using gametes from anonymous sperm and ova donors was diagnosed with spinal muscular atrophy type 1. Fertility and Sterility.

2009: New England Cryogenic Center (NECC) sued by a woman claiming that her children inherited genetic disorders. Other families who used this donor also report issues. Boston Herald.

2009: A Pacific Reproductive Services donor passed along HCM, a fatal heart disease, to 9 of his 22 known offspring. One child consequently died. JAMA.

2008: Idant Laboratories sued by a mother whose daughter was a carrier of the Fragile X gene (FMR1) as a result of donor sperm. The American Journal of Medical Genetics. Genomics Law Report: Strict Liability for Sperm? 

2008: Two donor sibling cohorts from California Cryobank have a very high percentage of their children diagnosed with PDD-NOS (Autism). O Magazine.

2006: An International Cryogenics donor transmits Severe Congenital Neutropenia to at least 5 offspring. Journal of Pediatrics.

2006: A Fairfax Cryobank donor offspring diagnosed with Delta Storage Pool Deficiency (delta-SPD). Self Magazine.

2004: A Fairfax Cryobank donor transmitted familial Hemophagocytic Lymphohistiocytosis (FH) to twins; one child subsequently died. Self Magazine.

2003: An egg donor passes along Cystic Fibrosis. FindLaw: Better to Have Never Been Born? Wrongful Life Litigation

2002: A Dutch donor-conceived 18 children before being diagnosed with Autosomal Dominant Cerebellar Ataxia (ADCA). Journal of Medical Ethics.

2002: One recipient, two cases of spinal muscular atrophy (SMA). Fertility and Sterility.

2001: British-based donor of Australian origin with at least 43 offspring passed along potentially fatal genetic disorder, Opitz Syndrome. London Sunday Times.

1995: California Cryobank donor who donated 1500 vials of sperm transmitted Autosomal Dominant Polycystic Kidney Disease. Johnson v. California Cryobank.

Currently, many US facilities either refuse to update donor/offspring medical information or, even if they accept updates, refuse to share the information. Or they make the process of reporting so complex and expensive that donors and recipients simply cannot comply or afford it. In addition, US sperm banks do not have an accurate accounting of all children born from any one donor, so if an illness is reported, it is impossible to notify all potentially affected families.

Inheritable diseases are caused by changes (mutations) in our genes. Humans have around 20,000 different genes, each of which has two copies — one copy inherited from each biological parent. Today there are more than 10,000 known inheritable diseases that affect approximately 1% of the population.

Mutations can be congenital. Mutations can be inherited from one or both parents; they can occur in the egg or sperm of a healthy parent and be transferred to a child; mutations can also occur in a fertilized egg. Whether a mutation in a disease-associated gene will lead to illness depends on the inheritance of the mutated gene.

Many people are carriers of one or more inheritable diseases but are unaware of their carrier condition or their reproductive risk.

"Researchers from Princeton University recently discovered that U.S. sperm banks differ widely in their testing protocols. They did a study of 27 provisionally qualified sperm donors and found many had genetic abnormalities. There were 30 genetic variants that were classified as 'pathogenic' and '66 with a high likelihood of causing gene dysfunction.' Whether these would actually cause problems in offspring would depend on the genetic makeup of the woman receiving the sperm. These researchers recommend more rigorous and standardized genetic testing of both donor males and recipient females."

The following is a partial list of genetic/medical illnesses and disorders reported by donors and recipient families on the Donor Sibling Registry. (This spreadsheet shows some of the diseases listed below which are shown to be genetic.)