Are we going to create superhumans?

, Marlou Kusters

Nicholas was conceived using sperm from a ‘highly intelligent’ donor. His experience and fear for the future brought him on a mission to ban anonymous donations.

A population of super-people only. That was Robert Graham's vision when he started the Repository for Germinal Choice in California. Also known as: the Nobel Prize sperm bank. He saw great danger in the fact that humankind was ‘dumbing down’. He meant: instead of survival of the fittest we keep the weak alive and they have more children. His mission to improve the human gene pool started with calling all the Nobel Prize winners and asking them to multiply their brilliant genes. As he didn’t pay them or charge the recipients, it’s clear that he strongly believed in this ideology. Though he was accused of being unethical, there are developments in the same direction. Achieving superior human cells is a subject of renewed scientific focus with the emergence of IVG and CRISPR technology, which both enable human genome editing on an unprecedented level.

Nicholas Isel is one of the 215 children born out of sperm from the Nobel Prize sperm bank. None of which were actually conceived with Nobel Prize winning sperm. The first fifteen years of his life he always felt something was off. He did not feel any connection to his asocial stepfather. After he was told the truth he began the search for his biological father. As the donors contributed anonymously, it took him more than a year and the help of journalist David Plotz to find him. Nicholas is 32 now and getting his story out and changing policy totally engrosses him. We speak with him about his views on the infertility industry, his genetic illness, his fears for the future and the mission he took upon himself.

 What do you think about Grahams mission?

''I think we are poisoning our own health. These artificial genetic drifts we are creating go against natural selection. Do we really want to have fifty people in this generation who all have the same dad? And those people have kids and so the next generation has hundred etcetera: it is a bubble. And then it becomes a realistic fear of running into unknown siblings. These experiments are not happening in a lab setting, this is the real world and it is a small world after all. It’s a dangerous game when donors share uniform characteristics. You know, diversity and survivability are the same thing. Look at a deadly disease like Ebola: the survival rate was only 12%, in a normal population. If you introduce that same sickness into a population that has been artificially engineered to be similar, you would have a lower survivability rate. They say they want to improve the human gene pool, but it does the opposite. The funny thing is that the people conducting these experiments are not going to live long enough to see the results. The people following will run into the same problems Graham had. Doing an experiment with no one writing anything down. No records. Is that how science works? The scientific process is supposed to be: you form a hypothesis, you test it and you document your results for peer review. I’m pretty sure there are steps he skipped.''

How is it to grow up as Nicholas? 

''The donor system is built around lies and secrecy. That’s toxic. The lies will come to light and if they don’t that’s even worse, because you’ll always have an itch you can never scratch. For me I could not connect to my stepfather. He was asocial and had a temper, which is the complete opposite of me. Do you know The Cinderella Effect? My stepdad was very abusive and we had to walk on eggshells at home. He was a Vietnam veteran with PTSD issues, alcoholism and a bipolar personality. The one time they went into relationship therapy the counselor said to my mom: ‘Leave him, he won’t change.’ I was fifteen when I found out he was not my biological father and I could only feel relief. My entire youth I felt something was off, but I never understood why. This is not something that is exclusive to me. It is a very common issue within the donor-conceived community. I know other people experience the same pain and genetic bewilderment. And it was really refreshing to hear from a adoptee calling it a primal wound. That is one of the best ways I’ve heard it put. Adoptees and donor conceived people have so many similarities in the disconnect between biological relatives. I feel like we can really empathize with each others pain. What it all comes down to is a child’s right to know their identity.''

You’ve got kids. What about people who can’t have babies?

''If I could not have kids I still would be against it. Then I’d have no kids. I know firsthand that there were no screening procedures in place to make sure that I was going to a healthy home environment. If it is done to the highest of ethical standards then I am willing to give the industry and the recipients the benefit of the doubt. That they can do this without there being a new story every month, about some corruption, like a fertility doctor who uses his own sperm. Or certain sperm was used for conception even though the men who supplied it had no intention of being donors and were told it would only be used for research purposes. Or the refrigerator failed and thousands of embryos were lost. It’s one thing after another. If they are willing to ban anonymity and start conducting themselves in an ethical way then I would be a lot more ok with it.

When my mom found out she needed donor sperm to get pregnant, she decided she wanted the best of the best. That’s why she went to the Repository for Germinal Choice. For her it became a purchasing decision. She did all of her research, compared products. I’ve seen the receipt from my conception: it was around 500 dollars deposit for the tank and she got most of that back. The recipients usually only think about themselves. But having a child is not a right. I believe it is a privilege. I’ve put a lot of thought into how other people feel. I can image the pain of infertility, it is very sad. I sympathize with them and I do hope they get that opportunity. But the rights of the children being created in these ways should come first and foremost.''

How was it to meet your biological father?

''I had a difficult time tracking him down. At this stage I still thought he was a Nobel Prize winner. David Plotz, a journalist, wrote a series of articles on the Repository and helped me to find my father. I am amazed and thrilled to have met him. Not everyone like me gets that opportunity. But my father is not exactly the best role model. He has lots of children with many women and more than thirty offspring through multiple sperm banks. He has been to jail multiple times. He told the Repository that his IQ was 160 because he knew they wanted people with high numbers. No checks were done. It turned out he had schizophrenia and Grahams words that he should “be fruitful and multiply” went to his head and it destroyed him. This illness also runs on my moms side of the family. So I got it on both sides. And when that happens the chances of you inheriting it as well are very likely. If my mom had any idea about it, she would have stayed far away. Some people get better. I have the kind where it will only get worse. The life span of people who suffer from schizophrenia is on average 23 years lower than the rest of the population. Usually because of suicide: they just get sick of it. It is really tiring. You constantly question which thoughts are real and which ones are not. You have to learn coping mechanisms to calm yourself when you get upset or find yourself on a train of thought that makes no sense during moments of clarity.''

That is a very sad story 

''There is no value in telling my story just for entertainment sake. The big media tip-toes and just dips their big toe in the water when it come to this subject and they don’t dive into the bigger issues like access to family medical history, the artificial genetic drift created when you have one donor producing scores of children. Is that good for society or any individual? It is really disheartening that they only see it for entertainment purposes. We are not going through the search efforts because it is fun. That is something that is pushed quite a bit. The media want to see that reunion moment. Hugging your relative for the first time. Capture those emotions and ignore the rest. They’d ask: do you feel like you have a connection with your donor? Of course I do, he is my biological father. What kind of question is that? Now I’m just using my story as an example and doing something positive with it to help future generations of donor conceived people. It’s not about me; what I’m proposing isn’t meant to be retroactive so it won’t help me find lost siblings. I am in the process of pushing legislation to ban donor anonymity in the US going forward and that’s my goal.''

What challenges do you face in realizing your goal?

''In September 2016 I submitted a citizen’s petition to the US FDA [Food and Drugs Administration] to ban donor anonymity, which they accepted for review. Two more similar petitions soon followed and are as well under review. One of those was handed in by the DSR and I don’t even get along with the owner of that organization because of the way she runs it. That’s when you know it’s a movement though: when you have people on your side that you don’t even like. Still it is very hard. The fertility industry is fighting me tooth and nail on this. After my petition came out they paid for a study to show that if anonymity was banned then it would increase the cost of sperm. The second hurdle is our inefficient government: the average response time for the three-page document I sent in is two years. I expect it can take up to a decade, but it will get done. I will see it done within my lifetime. Donor anonymity will be banned. And even if I don’t succeed in that goal through legislation, commercial DNA-testing is doing that too. I’m developing a road-map for future advocates to follow. It‘s worth pursuing this because the negative consequences are so blatant that it surprised me that nobody has done something about it already. It will be my legacy that my kids can brag about even after I am gone.''

What do you think will happen in the future?

''This is the beginning of a biological arms race between nations. And the first nation that gets ahead by even one generation is the winner. Because they will then have all the momentum they need to stay ahead. It is a strange mix between Gattaca and Brave New World (books) that we are headed towards. There are new things that will be done in the near future that makes that was done to me look like child’s play. Forty years after IVF-treatment was introduced, we now get IVG (in vitro gametogenesis) which has the potential to conceive a child with only one genetic contributor or even a group of more than two individuals. Then beyond that is the crafting of synthetic gametes, so there will not even be a donor, only a template. The Human Genome Project – Write anticipates they will be working on this for over a decade. It means there will eventually be ‘babies’ born without parents. Because how can you test it without creating an actual baby? That is where it gets very tricky ethically. So if we don’t get donor anonymity banned before synthetic gametes becomes a thing, we are never going to have a chance. Then it will be like: ‘don’t worry where you came from, we made you in a lab’. If we make sure there is regulation in place before that happens, then there is a precedent. Like, we have to tell him at least what we mixed together and how to make him. Even then it all comes back to identity. If you don’t have that, your whole perspective is flawed.''