Make sure to report all births to your sperm bank!
- 4/16: What's missing from current methods for genetic screening of sperm donors? "To protect future children from highly heritable diseases, sperm banks need to modernize their testing methods,..."
- 12/15: EC Gynaecology Commentary: The Need For Comprehensive Genetic Testing of Gamete Donors
- 12/15: Huffington Post: The New "Check Box" That Needs to Be On Pediatrician's Forms
- 9/15: Huffington Post: Donor Conceived People and The Reproductive Medicine Industry Disconnect
- 4/15: Couple Sues Xytex: A Canadian couple is suing a Georgia sperm bank, saying that the donor the company provided for them turned out to be a schizophrenic who has a criminal record and whose photo was doctored to make him look more attractive.
- 4/15: The Toronto Star: Sperm donor shortage forces Canadians to look to US , US Sperm Bank Admits It Doesn't Verify Donor Information
3/15: UK twin sudy shows autism "largely genetic": A UK twin study estimates that between 56 and 95 percent of autism spectrum disorder (ASD) cases are attributable to genetics.
The findings, published in JAMA Psychiatry , suggest that the risk of ASD and related traits is more strongly influenced by genetics than previously thought.
'These results further demonstrate the importance of genetic effects on ASD, despite the dramatic increase in prevalence of the disorder over the last 20 years,' explained study author Beata Tick from the Kings College London team.
- 12/14: Code Unknown: Trying to connect with sperm donor through online community: a donor family deals with long QT syndrome (can lead to sudden arrhythmia death syndrome or SADS) in two generations.
- 4/14: Fox News: It's time for states to outlaw anonymous sperm, ova donations
2/14: BioNews: Out-of-court settlement for girl conceived with abnormal donor sperm.
A London fertility clinic has settled a claim over a 4-year-old girl born with the genetic defect balanced reciprocal chromosomal translocation, after a mix up in the sperm used in her conception.
6/13: Flanders News: Danish sperm donor also passed on genetic disorder in Belgium
Nordisck Cryobank's donor 7042 has passed along the rare NF1 genetic disorder to offspring. Of the 43 children in 10 countries conceived with the help of the defective sperm, 9 have the disease (also known as Von Recklinghausen's disease), and 2 of those are in Belgium. NF1 is a rare genetic disorder affecting neurologic functions in humans.
- 5/14: Letter to President Obama from a Belgian woman: about this case, in which it's noted that the number of children born with this sperm , " ...is a staggering 99 children worldwide, of which 34 conceived in your country."
5/13: NYU Interventional: Donor children live in ignorance of their father's illness
Cryos in Denmark has been criticized by the National Board of Health for not adhering to the recommendation of 25 pregnancies per donor when it was discovered that 64 children may have inherited a rare disorder from their biological father, Donor 45.
3/13: Copenhagen Post: Sperm donor with genetic illness speaks out
The Danish government health agency has been criticised for not looking for children who may have been born with a cancer-causing illness, Lynch Syndrome, inherited from an anonymous sperm donor. Even though the mortality rate can be significantly reduced with early treatment and diagnosis, the health authorities have decided not to search for the five to ten children who may have inherited the disease.
1/13: Readers Digest: Can you Inherit your Mother's Health?
Many aspects of our health are genetically linked. According to researchers from the Institute of Cancer Research at the University of London, there's a 57 percent chance that a girl will start menstruating within three months of the date that her (biological) mother began. Here are 9 other women’s health conditions that experts say we may have inherited from our (biological) mothers...
11/12: America Now: Rolling genetic dice with a donor
Some ART facilities screen for some diseases, but few screen for potential genetically-inherited conditions. This article talks about the repercussions when thorough screening hasn’t happened, and gives a synopsis of a few other articles on the same topic.
9/12: BBC News: Denmark tightens sperm donor law after NF1 transmissions
Due to a sperm donor passing along NF1, a rare genetic condition which affects the nervous system (and is untreatable), Denmark has passed new restrictions on Danish sperm bank operations, including limiting the number of offspring to 12 per donor.
9/12: Daily Mail: Danish sperm donor passes rare genetic disorder
These two articles published 9/12 are referencing an earlier story, originally reported by DSR members (see the 5/11 Copenhagen Post article below). The interesting thing about this story is that this donor is also a California Cryobank donor. We regularly hear stories about sperm donors passing along medical and genetic issues to children here in the US, but no regulation is ever initiated.
5/12: The New York Times: In Sperm Banks, a Matrix of Untested Genetic Disease
The case of a child with cystic fibrosis, which was genetically linked to the donor used to conceive him, highlights the need for more regulation of the sperm bank industry, specifically around the genetic testing of sperm by cryobanks. In this case, the sperm had been purchased from New England Cryogenic Center (NECC) who had purchased it from a bank that is no longer in business, and was at least 20 years old.
2/12: CBS: Parents Sue Cryogenic Center Over Child’s Cystic Fibrosis
This CBS report of the lawsuit brought against New England Cryogenic Center exposes that the sperm bank has faced very little oversight in its 30-year history. It also points out that New York will not allow sale of NECC’s sperm donated at and purchased from another defunct cryobank. It is reported that NECC in initiated internal regulations surrounding that restriction, but did not remove that donor from their catalog.
7/11: ABC.com: Sperm Donor's 24 Kids Never Told About Fatal Illness
This article addresses the question of what regulation should be in place to protect children from conditions passed along by a donor, when a donor is not required to update the sperm bank where he donated. The donor in question had surgery for Marfan’s Syndrome and an aortic defect, the same potentially-fatal heart condition that he passed on to at least one of his (at least) 24 offspring, who each have a 50% chance of having contracted the disease.
6/11: Infertility & Reproductive News: Gamete Donation: Medical and Genetic Implications
Wendy Kramer provides an overview of the medical issues that have exposed the lack of regulation of the sperm and egg donation industry, and offers recommendations for how to move forward in a more ethical way.
6/11: The Copenhagen Post: Anonymous sperm donor passes on rare illness
A donor used in the US, Sweden, Belgium and Denmark unknowingly passed along a genetic disease to at least nine children conceived using his sperm.
5/11: The Local: Swedish women warned over Danish sperm
The preceding two 2011 articles are referencing California Cryobank and Nordic Cryobank Donor 7042 "Ralph."
4/11: 2 nd International Cryo Conference PowerPoint Presentation: The Case for Comprehensive Medical and Genetic Testing of Gamete Donors
This PowerPoint, presented in Valencia, Spain, describes the medical issues associated with using donated sperm and/or eggs to assist with reproduction.
8/10: The Columbia Science and Technology Law Review: The Regulation of Genetic Aspects of Donated Reproductive Tissue—The Need for Federal Regulation
This article provides a great overview of current medical practices in sperm banks and egg clinics, noting lawsuits involving medical issues, and making a case for federal regulation.
11/09: JAMA: Implications of Hypertrophic Cardiomyopathy Transmitted by Sperm Donation
Nine of a man’s 24 known offspring were genetically affected by his asymptomatic HCM, a genetic cardiovascular disease. At least one child has died.
11/09: JAMA: Genetic Screening of Sperm and Oocyte Donors: Ethical and Policy Implications
This article discusses the current lack of regulation and the potential ramifications of the proposed mandate for genetic testing of sperm and egg donors.
11/09: The Washington Times: Sperm donation testing falls short
The Washington Times reports on the JAMA study of a man who passed HCM to his offspring via sperm donation.
11/09: BioNews: Sperm donor screening needs to be overhauled
The DSR campaigns for more rigorous testing of sperm and egg donors for genetic diseases, and advocates the use of a monitored delay in the release of donor sperm to reassure users of its safety, and to track and limit the number of offspring from each donor.
11/09: The Washington Times: Doctor blames profit motive for sperm-donor diseases
An interview with former DSR Board of Directors Chair, Kirk Maxey, discussing the lack of required testing of donated sperm.
5/09: BioNews: The case for comprehensive medical testing of gamete donors
The DSR calls for mandatory genetic testing of egg and sperm donors.
4/08: O Magazine: The Children of Donor X
Oprah's magazine follows the stories of several families who used the same anonymous sperm donor from California Cryobank. All of them are navigating medical issues that they attribute to genetic defects from the sperm donor.
10/06: Fairfax Cryobank: Letter to the Editor of Self Magazine
Fairfax Cryobank responds to Self Magazine’s article, “The Truth About Donor 1084.”
10/06: Self Magazine: The Truth About Donor 1084
Self reports on Fairfax Cryobank donor 1084, and the medical issues he passed along to several offspring. The story highlights the frustration of the families, who feel the sperm bank should have been more responsive to their concerns.
Other Reported Health and Genetic Issues
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 lett the offspring's 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 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: Medical Alert from a Former Egg Donor: "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." 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. - Mayo Clinic
- 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..". Her full story.
- 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 chemo therapies."
- 2014: "My children have a disease called cavernous malformation disease: gene is called CCM1 (this is what all his 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 what 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 30′s. 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 ).
2011: At least nine children ( Nordic Cryobank & California Cryobank ) that have been conceived with the sperm of a man with a genetically inherited disorder Neurofibromatosis (NF1 or von Recklinghausen disease). Thelocal.com. [1/12 Human Reproduction: Case Report: Reproductive Genetics ]
- 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.
- 2014: From a DSR Mother: “I am the parent of two children who were born with a sperm donor. They are both in their early 30′s. 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."
- 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 Am. Journal of Med. Genetics. [8/09 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. J 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. [5/03 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). J. Med. 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.
- 2011: The Guardian: Donor-conception: 'I'd got to the bottom of a secret'
- 1995: California Cryobank donor who donated 1500 vials of sperm transmitted Autosomal Dominant Polycystic Kidney Disease. Johnson vs. 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 illness is reported, it is then impossible to notify all potentially affected families.
- 84% of sperm donors have never been contacted by their clinic(s) for medical updates.
- 96% of egg donors have never been contacted by their clinic(s) for medical updates.
- 23% of sperm donors felt that they had medical/genetic issues that would be important to share with families.
- 31% of egg donors felt they had medical/genetic issues that would be important to share with families.
- 94% of sperm donors would have accepted an offer for genetic testing, had it had been offered by their sperm banks.
Genetic and Medical Illnesses and Disorders
Partial list of genetic/medical illnesses and disorders reported by donors and recipient families on the Donor Sibling Registry:
- Acute Lymphoblastic Leukemia
- Agenesis of the Corpus Callosum
- Alpha 1 Deficiency
- Alpha Thalassemia
- Amniotic Band Syndrome
- Arnold-Chiari malformation
- Atrial Septal Defect (ACD)
- Bi-cuspid Aortic Valve Disease
- Auto Immune Thyroiditis
- Borderline Personality Disorder
- Branched-chain Ketoaciduria
- Breast Cancer
- Cardiac (ASD PDA) and Pulmonary Hypertension
- Brain Aneuurysm
- Canavan Disease
- Cavemous Angioma
- Cavernous Malformation D (gene is called CCM1)
- Cerebral Palsy
- Chromosome abnormality:5p minus or Cri-du-chat
- Coarctation of Aorta
- Colon Cancer
- Congenital Heart Disease
- Congenital Hypothytoidism
- Congenital Lobar Emphysema
- Cornelia de Lange Syndrome
- Cystic Fibrosis
- Cystic Hygroma
- Dandy Walker Variant
- Down Symdrome
- Duarte Galactosemia
- Dwayne Syndrome
- Ebsteins Anolomy
- Ectodermal Dysplasia
- Ehlers Danlos III -Hyper mobility syndrome
- Eosinophilic Esophagitis
- Epidermolysis Bullosa dystrophica (EBD)
- Febrile Seizures
- Femoral Antiversion
- Fragile X
- Genetic High Cholesterol
- Gitelman Syndrome
- Goldenhar Syndrome
- Graves Disease
- Hashimoto's disease (chronic lymphocytic thyroiditis)
- Hemoglobin D
- Hemophagocytic Lymphohistiocytosis
- Hole in Heart
- Horseshoe Kidney
- Hypertrophic Cardiomyopathy
- Hypoplastic left heart syndrome (also known as HLHS)
- Ileal Atresia
- Imperforated Anus
- Juvenile Dermatomyositis
- Juvenile Arthritis
- Karatosis Pilaris
- Kidney Reflux Stage 3
- Kleinfelter’s Syndrome
- Krabbe Disease
- Langerhans Cell Histiocytosis
- Lethal Dwarfing Syndrome
- Long QT syndrome (can lead to sudden arrhythmia death syndrome or SADS)
- Lung Cancer
- Lynch Syndrome
- Maple Syrup Disease
- Lymphoma/Leukemia (Precursor T-cell Lymphoma/Leukemia)
- Marcus Gunn Syndrome
- Medium Chain Acyl CoA Dehydrogenase Deficiency (MCAD)
- Medulloblastoma Brain Tumor
- MTHFR C677T gene mutation
- Mitral Valve Prolapse
- Multiple Hereditary Exostosses
- Multiple Sclerosis
- Myelomeningocele (Spina bifida)
- Myotonic Muscular Dystrophy (MMD)
- Neublastoma Stage 3
- Neurofibromatosis Type 1
- Noonan Syndrome
- NUT Midline Carcinoma
- PHACES Syndrome
- Pectus Excavatum
- phenylketonuria (PKU)
- Polycystic Kidney Disease
- Primary Sclerosing Cholangitis
- Prostate Cancer
- Pyloric Stynosis
- Radioulnar Synostosis
- Rasmussen’s Encephalitis
- Renal Disease
- Rett Syndrome
- Rheumatoid Arthritis
- Robersonian Translocation Chromosome
- Rotary Nystagmus
- Reitters Syndrome
- SVT- Superventricular Tachycardia
- Sagittal Craniosynostosis
- Sensory Integration Dysfunction
- sensory processing disorder (SPD)
- Severe Congenital Neutropenia
- Severe global development disability (GDD)
- Sickle Cell Carrier
- Seizure Disorders
- Sieves Disease
- Spastic Quad Cerebral Palsy
- Spinal Muscular Atrophy
- Sub-Aortic Membrane
- Tay Sachs
- Tethered Spinal Cord Syndrome
- Third Degree Heart Block
- Thyroid Cancer
- Trachea Esophogeal Fistuala
- Tetrology of Fallot
- Truncus Arteriosis
- Tuberous Sclerosis
- Type I and Type II Diabetes
- Ulcerative Colitis
- Vacteral Association
- Van Der Woude Syndrome
- Vasovagal Syncope
- Vesico-Uretal Reflux
- Von Willebrand Disease
- Williams -Beuren Syndrome
- Wilm’s Tumor (Kidney Cancer)
- Wolff-Parkinson-White Syndrome
- Zellweger Syndrome