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by: ASRM Office of Public Affairs
Orginally published in ASRM Bulletin Volume 14, Number 13
Read entire Blog: http://tinyurl.com/6vv9l79
Ok, this is a long one. First, please read a blog post by Stuart Bell from the American Fertility Assn. Then, replies from me and then Diane Beeson. This kind of Blog post, on a site that advises those struggling with infertility, is worrisome to me. Stuart might be very surprised to know that thousands of folks here on the DSR do indeed define their half siblings, half sibling’s parents, donors, donor’s parents, and donor offspring as “family”. Many of us here on the DSR have been willing to expand our view of what “family” means, and many of us have completely redefined the term since connecting with others on the site.
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:
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.
Really? (Term used with all due respect, just following your title).
Accidental incest “not” a problem? I invite you to come listen to the stories of random meetings amongst families that happen all the time on the DSR. These meetings take place at summer camp, at school functions, at parks, on cruises, at parties- just about anywhere.
In one group, of 75 children, there were actually two separate random meetings. Here’s one of the stories:
“we went on a cruise last week with our son. On the 2nd day of the cruise (he was stir crazy by this point) we visited the play room on the ship to keep him occupied. While we were in there playing we met a single mom with her son. We were on our way to lunch and invited them to join us. After spending about 30 minutes together, she asked which cryobank we used -we told her Fairfax -she did as well. As the conversation went on she asked us what drew us to our donor. A few things we said… his audio, education, height, religion but most of all, his childhood photo -you were called ‘the painter’ from the first time we laid eyes on you! Well, her face went pale and she said, “that’s funny, mine was painting too…” As we all sat there astonished at what was happening, we asked her the donor’s number and of course she replied, 214x!We were floored that fate would bring us together and 2 half brothers were sitting beside each other.”
And a few more, so that you get the gist:
1. “I had a similar experience with UNC Andrology. I have a 12 year old donor-conceived son. I know of one donor sibling (another 12 year old boy) whom we discovered at a potluck when the boys were 2-3 years old. “
2. “A single mom that I know from our temple has a daughter in the preschool there. Last year, for some reason, after school started, they switched her daughter from one preschool class to another. In the second class, the teachers observed that my friend’s daughter promptly bonded with one of the other little girls in class. They were frequently observed playing together, holding hands for extended periods, etc. At the parent-teacher conferences, the teachers suggested to the parents of both little girls that they arrange a playdate for the girls, as they obviously enjoyed each other’s company. During the course of the playdate, as one of moms is a single mom and the other moms are a lesbian couple, the manner in which the women became pregnant was an obvious topic of conversation. As the two mothers compared notes, they discovered that, in fact, the two little girls who had become such close friends so promptly were in fact half-sisters, having used the same sperm donor from the same sperm bank.”
3. “I also want to share how I found one more sibling. I was on a bowling league
this past fall and winter. I knew another woman had her daughter using a donor but we had never had much discussion about the issue. When our teams were bowling each other, we talked more. A few things she said caught my interest and after a bit I asked if she knew her donor number. She told me and it turns out her daughter and my son are siblings. What a small world.”
4. “I got the confirmation from the clinic today. I’m not surprised. The personalities are way too much alike for them not to be from the same donor. The 14 year old girl lives WALKING distance to my parent’s home. That was scary for me. I don’t mean the girl or the distance, but what would happen if a parent didn’t tell their children about this and it was a boy/girl relationship. Truth is always better. I’d hate for two children to end up married only to discover that they are half brothers/sisters.”
And here’s one case where a donor donated at more than one clinic (we have donors donating at up to 17 clinics on the DSR). Between 22-27% of surveyed sperm donors (this is published research) say that they donated to more than one clinic. This is extremely problematic when medical issues arise, as families and sperm banks have a hard time finding families because of a lack of accurate record keeping (sperm banks do not know how many, children are born from any one donor) as well as because the donor has a different donor number at each clinic, as there is no central registry where this is tracked or recorded:
“When our son was one, a new couple joined the mothers group with a six
month old baby boy [L] . A few weeks later, someone else in the group
remarked to my partner how alike S and L looked – when I heard about
that remark, I simply dismissed it from my mind as I didn’t agree. The
week after that, the mother of L remarked to me how beautiful she
thought our son was. I was a bit surprised that someone would go out
of their way to say that about someone else’s baby. [In retrospect, I
don’t think she had any conscious idea about the connection but I
think their similarity must have triggered something unconsciously.]
A couple of months later, our group held a party attended by about
twenty couples. At some point, a small-group conversation started
about donors and the mother of L was talking about how they made their
choice of donor, based on his particular interest in music. I was
listening in and I immediately knew, as the information was so
specific, that it was the same donor. I didn’t say anything at the
time but later I telephoned L’s mothers and told them I was pretty
sure it was the same donor. We had our donor’s code. They had gone to
a different clinic and didn’t have the code – but they were able to
contact their clinic to get it – and it was the same.”
Next item: Neither myself, or the DSR uses the term “sibling” when speaking about children who are related by the same biological father. The term “half sibling” has always been used, in every interview, published piece of research, media piece and is all over the DSR’s website. Maybe you were confused and partially remembering this piece that the AFA published about my son meeting his half sister Anna?
It was interesting that both she and Ryan referred to each other as
“brother” and “sister”. We parents had been using “half brother” and
“half sister”. When we were talking about what their kids would be
to each other, I suggested “half cousins”. Anna just looked at me
and said, “No. Just cousins”.
You go on to talk about the number of offspring not mattering because most sperm donors don’t care about the outcome of their donations. First of all, many donors do indeed wish to connect with their offspring, and many have, and also wait to, on the DSR. Really? You don’t see the negative ramifications of 150 offspring for one donor? You ask, “where is the harm”? Obviously, you have never talked with the parents in these large groups. And the children are all to young to ask at this point, but we will be hearing from them within the next 5 years or so. That will be surely be interesting and enlightening for us all!
In this age of DNA testing and internet search engines, many donors are being traced. There is no such thing as 100% anonymity, and no donors should currently be promised anonymity. (Donors should also be told that they could produce more than 30, 70 or 150 children.) If you had donated, how would you feel if you were then contacted by 75 or 150 offspring? And what about the medical and psychological ramifications to the families and the children in these groups? Have you read about the groups of half siblings with medical conditions? What about the random meetings? What about those children to desire to connect with their biological father, but never will because the size of the group is too daunting for the donor to ever come forward?
And then you go on to say, “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.” I invite you to read our summer 2011 published study on 751 donor offspring (note: more than half of these offspring were not DSR members). Or, please read our 2009 and 2010 published research on donor offspring that we did in collaboration with Cambridge University.
All research can be found in the DSR “Library” tab on the www.donorsiblingregistry.com website.
You say this: “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. “
Stuart, the FDA mandates little more than STD testing. Where are the mandates (not recommendations) for the necessary genetic testing? Why are children still being born with diseases like CF and Tay Sachs? Some banks and clinics, test some donors, for some diseases. Why wouldn’t donors receive the same testing that so many of us have had via 23andme, or some other commercial testing service? It’s less than $200. 93% of surveyed sperm donors said they would have accepted genetic screening, if it had been offered. It should also be noted that 96% of our 155 surveyed egg donors were never contacted for medical updates by their clinics, while 31% of them said that they, or close family members, did have medical issues that would be important for families to know about.
And finally, you say this: “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. “ Um Stuart, I know you talk to “clients”, but have you ever talked with the reproductive medicine authorities in the UK or Australia? How about New Zealand or Sweden? They think our system is archaic. It is quite apparent to them that the US lags far behind in updating it’s policies so that we no longer only serve the needs of the industry, the parents and the donors, but also consider what might be in the best interests of the people being created in this way.
One Australian clinician says, “Importing donor sperm is the easy option and something we thought long and hard about at Fertility Solutions” says Donati. “Once our team of nurses, scientists, doctors, and counselors had sat down and talked more about this option, it became clear that it did not fit with the clinic’s ethics on children born from donor sperm having a right to know of their biological origins when they reach the age of 18 – if not before.”
I am a medical sociologist with no financial conflicts of interest with regard to this issue, and with a longstanding interest in new reproductive technologies and how they become integrated into family life. Having just returned from Australia and New Zealand where I met with social scientists, professionals and laypersons, some directly involved with fertility services and some not, I was struck with your statement that “clients from all over Europe and the world… 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.” I found quite the opposite to be true. Most people I discussed these issues with, as with those from Canada and many European countries, are appalled at the crass commercialism of several aspects of the American fertility industry including the ethically weak focus on counseling and preparation we provide for raising donor-conceived children. They are particularly concerned about the lack of attention to the rights of the donor-conceived person and the effects of secrecy and deception in families using reproductive technologies. Your statement is no doubt correct if you are speaking of those clients who come to the US seeking fertility treatment. Fortunately, they do not represent the majority opinion in the countries from which they come. In the midst of their struggles with infertility it is often easy for those who desperately want children to focus on the immediate challenge and lose sight of the long-term interests of the child. It is the responsibility of health care providers to help them to see beyond their immediate distress and focus on the long-term interests of the child being created rather than to simply provide the most profitable and easy short-term technological fix. In my experience, the US approach is held in high regard only by those with shortsighted personal interests in doing so.
Diane Beeson, PhD
This past January, Ryan and I met with our congressman’s office to discuss possible
regulation for the reproductive medicine industry. He wrote us back this week
saying that he, “is interested in looking into ensuring that all donor-conceived
children have the right to know their biological parents when they turn 18.” And
then he said, “If a guarantee like this were to be established at the federal
level, is this something you would support?”
So I would like to gather input from families on why this type of
legislation would be important for donor offspring, their parents, and also for
donors. As we all know, many other countries have passed this type of
legislation, and we have always felt that it would also inevitable in this
country, as soon as the question “what is in the best interests of the child to
be born” was asked and debated publicly.
Would people email me their thoughts on a child’s right to know
their genetic, ancestral and medical backgrounds? And what about the age of 18?
(I know for my son, a much younger age would have been much more appropriate.)
Anyone care to tell their stories of connecting? Or their perspectives on
desiring contact with their unknown genetic family? Is it fair to bring a child
into the world who will have no chance of knowing about one half of their their
ancestry, their genetics or their medical backgrounds? Is it an innate human
desire to want to know where we come from, and should donor children have that
right? Should egg and sperm donors be properly educated and counseled about
what being an open donor really means?