When looking for a donor a question that normally pops up in early discussions is family medical history. When we visualize a baby we imagine our baby to be born healthy, in the western world we kind of take this for granted. It’s not something in society people have discussions about, adults in traditional style relationships planning children they tend to bypass getting genetic testing they kind of just figure we’re a couple and the baby will be healthy. However, as soon as it’s a donor we feel we can be pickier as there is no strong connection of feelings created, it’s more of a transaction. We also compare online donating properties to those of the clinics.
Most of us without putting much research into things we presume that the sperm banks have a list of every personal medical file of each and every family member of the donor who walked in through their walls. This is far from the case, and in reality, it’s still the same as online donating it’s an honesty system. Unless the donor is guardian over any family member he doesn’t have access to any of his family’s medical information that is on the doctor’s file and nor does the clinic have access to their information.
Most clinics will sit the donor down and layout an A3 piece of paper on the table to which they usually hand draw a family tree, starting with you and your siblings and branching it out to parents, aunts and uncles, nannas, and granddads. Once they have all the names on the sheet, they will go through the donor and ask about each one and if they’re aware of any health issues they may of had (This is something you could also sit down with your donor and do).
It’s ironic though because going through a clinic we automatically think the medical history is going to be more authentic. Many people have messaged me over the years with concerns that they feel their donor might not disclose them truthful information or leave out vital parts that could deter them from picking them. It’s in my experience over the years I have met and spoken to lots of men that would have loved to be able to donate and these great men would have been perfect except for one thing they weren’t confident in their families genetics and they had concerning issues that happen to other family members that they would hate to see passed on to any children. The majority of people I find want the children to be born healthy and the ones who donate are confident either through knowledge or arrogance at the very least.
This is not to say it doesn’t happen, I have spoken to men who have donated at clinics, and they said by the time they sat down with the clinic and discussed family history, they didn’t want to get rejected so they withheld information, others weren’t prepared and it wasn’t until after they did the family medical history report then they became more conscious of other family members medical history through chats in conversation, Obviously, this didn’t help the prospective recipients from the clinic as this new-found knowledge wasn’t updated into the donor’s file. Some of these men wanted to donate online, and I asked them “Well wouldn’t you withhold information of family medical history to the people you speak to online”. The replies I received were interesting along the lines of the following.
“No because when chatting online you haven’t jumped through the hoops that clinics have put you through”
“No because at the clinic it feels like it’s just going to them and I can’t put a face to a person, and if I help someone online it feels more personal and I have more accountability because the people I help know who I am”
Overall people felt less compelled to lie face to face to a person, but as the saying going once a liar always a liar? Or was that just a little white lie in their eyes to the clinic? Either way when donating online especially I encourage honesty as you maybe caught out and you don’t want to sour your donor/recipient relationship.
Another positive aspect of picking a donor online that you can keep in contact with whether or not it’s via email, instant messenger phone etc. You can find out future medical history as it happens. When a donor donates at clinic you’re left with only that current knowledge most of the time and if the donor is young chances are he doesn’t have health issues emerge until later in life anyway.
The clinics however do limited amount of genetic testing
The genetic testing isn’t as rigorous as we may think at clinics. Many clinics just test for the basics Cystic Fibrosis (CF), sickle cell disease, Fragile X, Thalassemia, Spinal Muscular Atrophy, Tay Sachs, Canavan disease, Familial Dysautonomia, Bloom Syndrome, Fanconi anemia, Gaucher disease, Cardiac disease, Glycogen storage disease type 1a, Maple syrup urine disease, Mucolipidosis type iv, and Niemann-Pick disease type A. Because of the lack of testing in some clinics there are children born with genetic diseases through sperm donation. This is no different to the normal world, however when you’re paying a high commodity for a product you would like to think the product you’re paying for is going to be risk free for that little person that will be created from it.
The Daily Mail published a story on 7th May 2018 As cited in the article “Marie-Claire Platt, Head of Campaigns at Ovarian Cancer Action, told the Daily Telegraph: ‘Without proper screening for hereditary cancer gene mutations, donors could unknowingly pass on an inherited risk of ovarian, breast, bowel and other cancers.” There are so many identifiable genetic mutations now that the clinics are simply ignoring perhaps out of the fear that they won’t have any suitable donors available on their books.
A classic example that most of us are aware of was Angelina Jolie Gene in 2013 had a double mastectomy and reconstructive surgery, as a pre-emptive move to avoid cancer, she carries the faulty gene called BRCA1, which he doctors informed her she had an 87% risk of breast cancer and 50% risk of ovarian cancer occurring within her lifetime unless she underwent surgery. For the record men can be carriers of this gene also which exposes them to higher chances of prostate cancer, pancreatic cancer and a slight rise in melanoma.
In an article on June 2nd, 2020 by Mamamia a lady speaks out about her and her husband both being carriers of Spinal Muscular Atrophy (SMA), to which neither they had any idea they were carrying this gene mutation. Sadly their daughter Mackenzie passed away in their arms at 7 months and 11 days old, she was born terminal, and this article sends out a very strong message that could of been easily avoided.
So if the clinic’s genetic testing is limited and to get genetic testing done from a doctor/hospital you’re looking at up to $550. Enter online genetic testing companies such as Myheritage.com and 23&me these companies are cheap in comparison and give you full access to not only ancestral linage but your full genetic code. I recommend women or the person carrying the baby to buy their kit first and find out if you’re a carrier of any defective genes, then if you’re you need to ensure your donor is. He will then have to do a test. Some donors will be happy to cover the cost but ultimately a donor shouldn’t be out of pocket, so in most cases, the recipient will purchase another kit for the prospective donor.
Genetic testing is almost the be-all and end all of the family medical history questions it eliminates all doubt for under $150 for that piece of mind that your future child will more than likely be healthy! The cost of this isn’t expensive when you’re cutting out clinical costs and future ongoing medical costs if your child was to be born with such a condition.
Although truth be told not everything can be found in genetics well yet anyway, mental illness is still a mystery, and plenty of misdiagnoses and many cases can fly under the radar. An infamous incident of this in the donor world was Schizophrenic Christian Aggeles who donated at Xytex Corp and father 36 children. American sperm banks do more tighter screening than Australian clinics simply because the pay element they have so many donors willing to donate, yet this guy was able to sneak past “the rabbit-proof” fence.
In Australia we have had men accepted into clinics with them declaring they were on the spectrum, and in some cases been accepted with the reason being there isn’t a genetic link they can identify to autism so it may not be hereditary.
While online donating a situation of mental illness like this could be possible, yet less likely if you meet your donor and sit down with him ask him an array of questions, you can get an idea of his mannerisms and personality first hand, as humans we get vibes and have intuitions and if something doesn’t feel right we can choose to walk away. Our reporting system is great and people are quick to report if a meeting was a bit strange or concerning.
However, listed below are some of the types of mental illness diagnoses you can discuss with your recipient/donor.
- Obsessive Compulsive Disorder
- Bipolar Disorder
However, if you can’t afford genetic testing, recipient/donor conversations about possible multifactorial inheritance disorders that have possibly occurred in the family such as
- Types of Cancer
- High blood pressure
- Heart disease
Then there are Single-gene disorders but remember the family may be carriers of it and have no one in the family yet that has been affected by the condition and also you may be a carrier of these also, so it’s also up to you to get tested.
- Cystic fibrosis,
- Sickle cell anemia (sickle cell disease)
- Marfan syndrome
- Fragile X syndrome
- Huntington’s disease
- Duchenne muscular dystrophy
- Polycystic Kidney Disease
- Tay-Sachs disease
- Maple syrup urine disease
- Alpha-1 antitrypsin deficiency
- Familial hypercholesterolemia
- Rett syndrome
- Fanconi anemia
- Kartagener syndrome
- Xeroderma pigmentosum
- Hereditary spherocytosis
- Tuberous sclerosis
- Von Hippel-Lindau syndrome
Lastly, another good thing to ask about is family lifespans? How long does each family member live for has there been any premature deaths, did they get to a good age without medical issues?
Hopefully, this has offered insight and knowledge into things to look for about family medical history and also to make us aware of standards that clinics are also operating at. Knowledge is power 🙂