By Stuart Bell
I am writing in response to Iris Wachler’s recent blog entitled “Growing Concerns about Non Regulation of Donors.” Now, let me disclose a few things:
- I usually really like Iris’s pieces and so appreciate her commitment to our field.
- I am a parent who has a child with my husband through egg donation and surrogacy.
- I am the co-chair of The American Fertility Association
- I am the co-owner of a surrogacy, egg donation, and sperm donation company.
So, with all of that said, please know that I am coming from a place of great appreciation for what Iris said—I just happen to not agree with a lot of it!
Let’s start with the first line—“I heard the term “accidental incest” for the first time last week.” Well, that certainly is an attention grabber! If it were on the cover of the National Enquirer I am sure we would all pick it up. But, is this really a big problem in the world? Is it really something that geneticists are concerned about? The answer is no.
First of all, let’s deal with the genetics issue. I spoke with Dr. Mark Hughes, a world-renowned geneticist, several years ago at a donor conference and asked him if it would pose a health concern if two people who were genetically ½ related were to have offspring. His answer was that for most of the developed world consanguinity does not pose any increased likelihood of health concerns or genetic related disorders for the offspring. I loved it when he laughed and said that this issue was really more of an “ick” factor for society than a health factor.
Now, let’s deal with the real world implications. Iris mentions an article that states that 150 children who were created using a single sperm donor (notice I didn’t say that he fathered them but we’ll get to more on the use of language later). There is great concern that there will be this “accidental incest” because there are so many children out there who share his genetics. But, there are only 150 of them and over 51,000,000 residents in the England. So, that means that there is a 1 in 340,000 chance that this could occur. So, do I really believe this is something to be concerned about – no.
Iris writes that the U.S. lags behind Britain, France, and Sweden by not regulating the number of offspring allowed from a single sperm donor. These same countries also ban commercial surrogacy and severely limit compensation for donors of any type. As someone who works with clients from all over Europe and the world, I can tell you that they certainly look to the U.S. as the leader in all things related to third party reproduction and do not hold their own countries attitudes and regulations in high regard at all. In fact, those very policies are the main reason that they are forced to come to the United States for treatment instead of being able to receive it in their own home countries.
Iris goes on to discuss the ASRM guidelines currently in place and states that there is no “incentive” for clinics or sperm banks to follow these guidelines. I thought as professionals our incentive was to “do the right thing,” which is what I have always followed. And, all of the colleagues I know in this field are upstanding professionals who truly care about their patients and the children involved. Sperm banks are not the enemy of the patient. They are providing an invaluable service that has helped thousands of families realize their dreams.
Let’s talk now about the ultimate cost of regulation should we decide to adopt the model of only 10 children born from a single donor’s contributions. While I have heard many people over the years make assertions that the sperm banks are really like real banks and are “rolling in the money,” that’s not been my experience or that of the colleagues I know in this field.
There seems to be this assumption that there is so much money being made by the sperm banks because the compensation to the donor is viewed as relatively low compared to egg donors. But, what isn’t taken into account is the huge overhead required by sperm banks—much of it due to current FDA regulations that we are required to follow. These expenses include extensive screening of the donors for infectious disease, materials and equipment needed to process, freeze, and ship the sperm, professional staff, rent, malpractice insurance, licenses, etc., etc.
My guess is if we adopted this 10 children rule, we would see the cost of a single vial rise 10-fold. That’s right, we’d go from an average cost of $500 per vial to $5,000 per vial. Given that most people doing artificial insemination (the most common use of donor sperm) need at least 6 vials to achieve a pregnancy, their cost would rise from $3,000 to $30,000. This would make it more expensive than egg donation and would severely impact the ability of many patients to even explore this option. Any perceived social value must always be weighed against the real detriments that regulation would create.
Now, let’s move on to one of the most common arguments that I hear about the reason to limit offspring. It’s what I call the “what about the children” argument and it assumes that great damage is being done to these children by the fact that they may have so many people out there who share ½ of the same genetics that they do. But, I ask, where is the real evidence of this harm?
Let me give you a couple of real world examples in my own life. First of all, I have 3 siblings and five double-first cousins. That’s right, my mother and her sister married two brothers. So, genetically, I am at least as close to my cousins as a person who shares ½ genetics from a donor is to another person sharing that same ½ genetics. But, did I ever consider my cousins to be my siblings? No, of course not. And, why not? Because my parents and my cousins’ parents and society said that we were cousins and not siblings.
Another example is something I experienced this summer in Provincetown during Gay and Lesbian Family Week. One of the events was a teen panel that featured teens from gay and lesbian parents discussing their issues and answering questions from the audience. There were four teen girls from different families who were all born via sperm donation or egg donation. Of the four, three stated that they had no desire to ever meet the donor or any ½ genetically related persons. They stated that they felt absolutely no connection except to their immediate family and relatives. They also stated that they were thankful to the donor for helping them “get life” but didn’t feel anything beyond that. The fourth young woman stated that she had met a “half sibling” because her mother had posted on a registry of the sperm bank and that she really liked the girl but didn’t think of her as a sister, just a special friend.
I was truly amazed at the level of this conversation and the ease with how the young women discussed something that we as adults seem to have so much trouble with. And, it makes me realize how important language is when discussing these issues. You’ll notice when Iris uses a quote from Wendy Kramer she uses the term “sibling” not even “half-sibling.” That is certainly Wendy’s right, and I respect her greatly for her passionate voice and work, but as a fellow parent of a child born through the assistance of a donor, I would never use that language with my own son. What I will tell him is that there was a nice person who donated some genetic material to help him be created. And, that there are some other people that she helped as well. These are not his siblings and she is not his mother. In our house a parent is someone who raises a child and a sibling is someone who relates to his or her brother or sister in that way. (As an aside I have always thought in the adoption world that it would be great if we stopped using the term “birth mother” and started using “life giver”).
Obviously, these are challenging issues but I think that every parent has the right to determine what is best for their own family. While psychologists can certainly give us input, ultimately they are not the ones parenting these children. So, just as Wendy has made a very vocal attempt to use words like “sibling” and “family” to apply to these children, I will be very vocal to make sure that we introduce other words that are, in my opinion, more applicable to the issue at hand.
Another issue that I have heard from my friends and colleagues in the mental health field is that sperm donors are not fully informed that having so many offspring is a possibility. I cannot speak for every sperm bank but I can tell you that we discuss that issue as well as do psychological screening. What we have found anecdotally with the majority of our sperm and egg donors is that they are doing this as a medical donation and are not that interested in knowing the ultimate outcome. I think it helps them separate the issue in their own minds that eggs and sperm by themselves are not children. They do not think of themselves as parents and certainly don’t expect the children to either.
There are so many related issues that we could and should debate. But, one thing that is very clear to me is that there is no research that has been done to show the impact on the children as it relates to how they relate to multiple offspring or how they feel about the donor’s role in their life. I hope that we can work together to do a comprehensive, scientific study with a large population of teens and young adults who were born through sperm and egg donation. This would allow us to determine what is and what isn’t important in this conversation. Then we can decide if further self or governmental regulation is needed.
Until such a study is done, I think we should all turn the volume down a bit on this conversation as it relates to regulation as it might attempt to address a problem that may or may not really exist for the majority of families. And, it certainly could do a great deal of harm for future parents who may be unable to pursue their own dreams of family.
Stuart Bell is the CEO of Growing Generations and is the Co-chair of the American Fertility Association. He and his husband reside in Los Angeles with their son.