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Growing Concerns about Non Regulation of Donors – Really???

Posted by Stuart Bell on with 19 Comments


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:

  1. I usually really like Iris’s pieces and so appreciate her commitment to our field.
  2. I am a parent who has a child with my husband through egg donation and surrogacy. 
  3. I am the co-chair of The American Fertility Association
  4. 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.

Comments

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Wendy Kramer Mar 6, 2012 10:59am

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.”


Diane Beeson Mar 8, 2012 11:13pm

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

John Avitabile Mar 10, 2012 12:14am

Both Wendy Kramer and Diane Beeson made excellent points, but I would like to comment about Mr. Bell's mathematics. Mr. Bell states the following:

"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."

That is actually quite incorrect. Assuming that his population numbers are correct, that people mate with just one person in their lives, and that a person is equally likely to mate with any person, the odds of any one individual mating with another person in this group is in fact 1 in 340,000.

But there are 150 such individuals in this cohort! Assuming an equal number of males and females (therefore 75 of each), the odds that no female in this group mates with a male in this group under these assumptions is calculated by the equation 1 - (((25,500,000 - 75)/25,500,000) ^ 75), which is 1 in 4,534.

And of course Mr. Bell's other assumptions are also incorrect, as people are much more likely to mate with people in the same age range, and all the people in the 150 person cohort are in the same age range. Perhaps the odds now become around 1 in 1000 that 2 people in the same 150 person cohort will mate with each other. And this still assumes that a female is equally likely to mate with all other males in the same age range, which is probably not the case.

And of course there are many such cohorts, though perhaps not as large as 150 people. This further drives down the odds that 2 people in some cohort will mate with each other.

In addition, this problem extends to the next generation as well. I myself am a 55 year old man who was donor-conceived. I do not know who my biological father was. Back in the days when I was conceived, sperm donors were typically doctors or medical students, and they typically donated many times. As it so happens, I have two daughters in their 20s. If I am in a cohort of 150 half-siblings, and if members of the cohort have an average of 2 offspring, then my daughters are in a cohort of 300 half-cousins.

On another point, Mr. Bell states the following:

"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 would like to point out that four people is a very, very small sample size. I would also like to point out that what interests and concerns people does vary throughout one's life. For myself, I am very interested in searching to try to find out who my biological father might be, and who my half-siblings might be. And I am not alone in this.

John Avitabile
Associate Professor of Computer Science
College of Saint Rose
Albany, NY


Corey Whelan Mar 10, 2012 11:18am

Folks, The AFA welcomes all points of view, both supportive and opposing on our blog pages. However, all comments must be respectful of the blog authors and other commenters. We reserve the right to remove comments that contain foul language or pornographic references. These conversations are important and all individuals, authors and commenters alike, deserve respect.

Mark Diebel Mar 10, 2012 12:00pm

To answer your question:

Yes, I would like more consideration of regulation of the practice, especially respecting the donor conceived access to their progenitor. The Episcopal Church is considering a resolution this summer at its General Convention that advocates for the donor conceived persons as having a right to know their "entire parentage" - referring also to the genetic parent.

The importance of having access (when desired) to this sort of knowledge is confirmed in adoption practice. Regulation of adoption practice, by state, has produced a hodge-podge. Federal regulation of donor conception should provide both the preservation and dissemination of identifying information to related parties.

Mark Diebel

Lise Johnson Mar 10, 2012 3:04pm

I want to respond to the bit about the 4 teen pannel. I personally found out about my donor conception as a teen and was very cool with the situation. I really care about my parents and understood why they did what they did. I still do understand it and am not against donor conceptions in theory. However, for many people, life is about growing and exploring and in many ways getting to know our own self better, so it makes perfect sense that I wouldn't become more interested in my donor parent until later in life. Takeaway is, just because someone accepts something as an adolescent, don't assume they will accept it as easily as an adult.

Red Huff Mar 10, 2012 8:32pm

I volunteer my time to help people locate and contact their relatives. Many of the families I've been helping were separated by gamete donation and so this is my reason for interest in the topic.

Based on your calculations above you find it acceptable to have 1 child per donor per population of 340,000. That translates to:
•40 offspring/donor within Metro London’s population of 13,709,000
•182 offspring/donor within the UK’s population of 62,041,708
•2,091 offspring/donor within Europe’s population of 711,064,145
•20,119 offspring/donor within the Earth’s population of 6,840,507,003

The American Society of Reproductive Medicine’s guidelines suggest a limit of 25 children per donor per population of 800,000 and that ratio reduces to a limit of 1 child per donor per population of 32,000. That translates to:
•428 offspring/donor within Metro London’s population of 13,709,000
•1,939 offspring/donor within the UK’s population of 62,041,708
•22,291 offspring/donor within Europe’s population of 711,064,145
•213,766 offspring/donor within the Earth’s population of 6,840,507,003

The donor's nieces, nephews, brothers, sisters, aunts, uncles, and his parents are all at risk of unintentional incestuous relationships with the donor’s offspring. The donor himself is at risk for unintentional incestuous relationships with his own offspring. Intergenerational relationships are not unheard of and neither are same sex relationships. The donor places himself, his offspring and his entire family at risk of unintentional incestuous relationships. In choosing to ostracize his offspring from his family group he has eliminated their ability to make informed decisions. His reproductive choice essentially makes it impossible for them to make informed reproductive choices.

The government agencies of the world that attempt to monitor and control the spread of disease within the general population rely upon the genetic accuracy of the persons named as the parents of every child born. When the people named on birth records as parents are not really related to the children as they claim to be, it undermines the accuracy medical research that is intended to reduce infant mortality and birth defects. The margin of error in the genetic accuracy of our planet’s birth statistics is growing so large as to ultimately render government funded Medical Research pointless. If infertile people appear on paper to be reproducing and fertile people appear on paper not to be, then everything researchers conclude about the health of those adults and the children they claim to be or not be parents of will be false and useless and ineffective for use in helping save anyone from anything.

I find your risk management approach dubious. What are the chances that there will be a romantic encounter with an unknown relative? What are the chances that a romantic encounter with a relative will result in the birth of a person who is mentally or physically deficient? None of the chance taken there appear to be your own. Am I wrong in stating that? I mean what are the chances that your actions with regard to gamete donation as an industry will cause you personally to have romantic encounters with your relatives and what are the chances that your own offspring will be born with mental or physical disabilities because of it? The reality is that some of the chances your taking involve the lives of people you'll never know and what are the chances you'll even be alive if and when any of them produce mentally retarded offspring. Its really not your concern and its very unlikely that anyone would be able to prove that your company was at fault for their child's birth defect, after all people are responsible for making their own reproductive choices right? All your doing is providing them with a venue to meet one another.

If you think taking away someone else’s ability to choose not to have sex with a relative is no big deal then maybe you should try doing that to a relative you know. Try telling your sister or your mother that they have no right to choose not to take place in an incestuous act (is that less offensive than what I wrote previously?) Tell them that the ick factor is nothing to worry about. Tell them the chances of that act producing a child with a mental or physical disability are very slim in most of the developed world. See how quickly you get back handed across the room for being insolent.

If you think cutting contact with biological relatives is acceptable then limit yourself to cutting contact with your own relatives rather than severing contact between another person and their genetic relatives. If you are taking risks with things and relationships that are not exclusively yours then you have ventured into unethical territory. That is how I see it anyway.

Red Huff Mar 10, 2012 8:34pm

Everything I've tried posting has gotten removed and I have not used foul language. How about numbers only?

Based on your calculations above you find it acceptable to have 1 child per donor per population of 340,000. That translates to:
•40 offspring/donor within Metro London’s population of 13,709,000
•182 offspring/donor within the UK’s population of 62,041,708
•2,091 offspring/donor within Europe’s population of 711,064,145
•20,119 offspring/donor within the Earth’s population of 6,840,507,003

The American Society of Reproductive Medicine’s guidelines suggest a limit of 25 children per donor per population of 800,000 and that ratio reduces to a limit of 1 child per donor per population of 32,000. That translates to:
•428 offspring/donor within Metro London’s population of 13,709,000
•1,939 offspring/donor within the UK’s population of 62,041,708
•22,291 offspring/donor within Europe’s population of 711,064,145
•213,766 offspring/donor within the Earth’s population of 6,840,507,003

Caroline Lorbach Mar 12, 2012 2:12am

OK, let me give my credentials before I start; I am the mother of 2 young adults conceived with donated sperm, I am a founding members of the Donor Conception Support Group of Australia (I have worked on a volunteer basis for this group in various roles for nearly 20 years and am currently its coordinator & national consumer advocate); I am also the author of Experiences of donor Conception: parents, offspring & donors through the years.
I do not apologise for having the view that there needs to be limits on the number of offspring born from each donor, all donor conceived people should have the right to know who their donors are no matter when they were conceived (i.e. the right should be retrospective) and it should be enforced by legislation.
Currently my own children do not appear to have a great deal of interest in their donors (they were each conceived with a different donor) but that may change. But regardless of what my children tell me about not being that interested in their donors they do say they should have the right to know who he is and then it would be up to them if they wanted to find out about him not have a third party hold that information and deny them the right to access it.
Over the past twenty years I have met and spoken to a great many donor conceived people and I have never spoken to one that says they should not the right to access information.
In your blog you spoke about needing a study to prove "harm" - I have heard this argument from a number o people over the years, the majority of them medical professionals some of them the very same people who set up clinics here in Australia in the 1970's and chose an anonymous system with no studies to back them up but now when donor conceived people and their parents want to change things we suddenly have to have a "study". Whether one person is harmed by a system or 10,000 does it matter? If people are being harmed by a system then we need to do something to right that wrong.
You talked about it supposedly not being a problem if half siblings meet and form a relationship and that you didn't think the chances of that happening would be that great. Well, I am not a scientist or a statistician but what I am basing my opinion on is those donor conceived people who talk to me about the fear of accidentally meeting a half sibling (we do need terms like this so that everyone understands the exact physical relationship between people) and forming a relationship. A great many do fear this because they do not know how many other people were conceived from the same donor; they don't know who they are or their sex, year or place of birth. I would have hated to go into my teenage years worrying about that but that is what my children have had to cope with and tens of thousands of other donor conceived people as well.
As parents of donor conceived children we can give them words to use to describe the donors or their half siblings but they may ultimately use the words that they feel are appropriate whether we like them or not. My husband and I tried to use fairly neutral terminology when our children were young; as they have grown they have used many different words but now they are adults they do use phrases like “donor dad”, “half bother/sister” and who are we to tell them that is wrong? They are the ones living with the consequences of how we decided to create them.
I for one will not “turn down the conversation” until donor conceived people have the same rights (in Australia) as adopted people to have knowledge of their biological parents.

Red Huff Mar 12, 2012 4:09pm

Speaking as the head of the American Fertility Association, you have suggested above, a lack of scientific evidence to warrant a government mandated limit to the number of offspring produced by individual gamete donors. Your post asserts, that according to noted professionals in the field of genetic science, there is no medical evidence to substantiate fears that inbreeding of maternal or paternal siblings results in offspring with lower intelligence or higher than average rates of birth defects. So are you really saying that AFA takes the position that there is no logical reason people should avoid producing offspring with their maternal or paternal siblings other than to sidestep unfounded societal taboos?

Allison Rouble Mar 12, 2012 7:59pm

I am not an expert in any other way then I am the mom to 3 children born via sperm donor. I suppose I am bringing the basic moms view to the table, I don't have numbers and I don't have scientific terms, but I do have my experience.

I agree with Diane when she says:

“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.:

We were starting our sperm donor journey in 2008 in British Columbia, Canada and at that time we were required to sit down with a therapist that the fertility clinic recommended we use. I was petrified that he would interrogate us and find us unsuitable for sperm donation, but instead the required hour was only about 30 mins in reality and he hardly asked us much more then did we both agreed that using a Sperm Donor was the right choice for us as he wanted to make sure that I wasn’t pushing my husband into anything he did not want to do out of desperation to have a child. That was it, that was our counselling, we spent the rest of the 30 mins talking about hockey and how beautiful Vancouver Island was. At the time I was relieved that it went so well, but in hindsight I wish that it had been a far more intense process, that required us to go to see the therapist at least a few more times. We did end up getting pregnant and eventually lost that baby due to severe genetic issues that were discovered upon the baby having an autopsy. After going through genetic testing myself to make sure the issues did come from me it was determined that it must have come from the donor, but as there was no way for us to actually find out all we could do was report the incident to the sperm bank and they did make us a promise to pull that donor. I recently checked to see if he was still an active donor and saw that he was a restricted donor only to be used by those family who already have a child using his sperm. I often wonder if the sperm bank took it upon themselves to let them know that there was a genetic issue with one of his offspring.

I have also recently found out that our donor has 23 reported births, and it did put me into a small frenzy, my reaction was who are they and where are they? Not because of accidental incest but for my children. I want them to know, want them to have all the information and I feel like it is my responsibility to be able to give that to them when they are old enough to receive it (they are only 22 months and 3 yrs old at present) I know of 2 of their half siblings so far, one we found on the DSR the other contacted me through my blog. We are in Canada and I don’t think that many people are using the same donors up here as frequently as they are in the US (but I could be totally wrong about that) I purchased my vials from xytex. The interesting thing is that when I found the other to families who had used the same donor they only lived about 1 hour away (in the US) from each other and one of them has a mutual friend with the same least name as the other…….it can happen!

Stuart Bell Mar 12, 2012 8:17pm

Thanks for all the comments on my posting. I think it is great to have this kind of dialogue going and I wanted to respond with more of my opinions and clarifications.

First of all, for John I’d like to start by saying that I am very sorry that you don’t have information about the donor who helped your mother conceive you. I believe that every child has the right to information about their genetic background. That is why most sperm banks and egg donor programs now offer extensive biographical and genetic information. Some, like mine, even offer adult photos and videos of the donors as well as donors who are open identity and willing to meet the child at some point in the future.

Let’s say I agree with your 1 in 1000 number (although you aren’t accounting for people who move, people who are gay or lesbian, people who will never marry or have children). But even 1 in 1,000 is considered scientifically to be statistically insignificant. Further, as I pointed out in my article, the geneticists who are tops in the field do not believe that people who share ½ of a genetic history would have a discernible increased risk for their offspring having genetic related disorders than the general population. And, if this issue is a big concern for families or individuals, DNA testing is inexpensive and easily accessible and would eliminate any risk of the issue of consanguinity.

Finally, for those offspring, parents, or donors wishing to connect with those they have a genetic relation to, there is a great program called the Donor Sibling Registry that provides that forum.

Now to Wendy’s and Diane’s Comments

As for other countries, let’s turn first to Australia which you both discussed. I have been told by patients there that they are told it may be 6 years before they are matched with an egg donor.
Denyse Asher, an IVF scientist is quoted on her web site http://www.donoreggsaustralia.com.au/
“Due to the fact that altruistic donor oocytes are rarely
available in Australia, we have sought and found alternative options overseas.
We act as a referral base for these units. My role involves the co-ordination,
preparation and monitoring of the couple in order to minimize the stress
related to an oocyte donor cycle. Cost of treatment varies considerably
depending upon the couple's requirements and the options different units
can provide. We have had over 300 babies born and have ongoing
pregnancies. We have almost always been able to find oocytes for patients.”

In addition to the issues of egg donors, New South Wales (home to Sydney and the largest population in Australia) last year passed one of the most restrictive laws against surrogacy in the world making it an offense punishable by prison and several hundred thousand dollars in fines if a resident there goes out of the country to have a child via surrogacy. I hardly see how anyone would point to Australia as an advanced country when it comes to third party reproduction.

Most other countries that address sperm and egg donation and surrogacy including Canada and the UK have very restrictive regulations which limit or prohibit the commercial practice of these options and even sometime include the limitation of IVF itself based on age, gender, etc. This means that patients have long waits and little hope of success. That’s why they come to the U.S.

Now, is our system perfect? Of course not. However, it is much more advanced and open than it was a decade ago. Today, there are sperm and egg donor programs like mine that offer:

• Adult Photos and Videos
• Extensive Genetic Information and Screening
• Psychological Testing
• IQ Testing
• Donors willing to have their identities known to the recipients and offspring and to meet at some point in the child’s future.

Since these options exist already I am not sure what we would gain from regulation except the potential chilling effect that might create a shortage of donors as is happening in other countries. These changes came about because of patients and parents demanding them. People like Wendy have had a tremendous positive impact on the field in these areas. And, while not every program has these offerings, even the large programs are moving in this direction.

Regarding Wendy’s comment about the FDA requirements being just an STD test is not accurate. Just some of the FDA requirements include:
• Blood screening for infectious diseases before the donation cycle begins and after six months from the last donation.
• Full Physical by a doctor every six months
• Extensive health history questionnaires

In addition, our program and others do the following:
• Psychological testing (MMPI)
• IQ Testing
• In-Person Video
• Monthly infectious disease screening
• Genetic testing and counseling

Not to mention all of the staff costs, donor compensation, rent, equipment, licenses, parking validations. The bottom line is that if you wanted to limit the potential offspring to 10, there would be absolutely no way to sell a vial for the current average of $500. As I said in my blog, for a sperm bank to make any money at all it would put the vials at a minimum in the range of egg donation costs. I am not saying I have a problem doing that but I think ultimately the consumer is going to want to weigh the cost/benefit analysis of any such proposal. Do we want to have sperm donation out of reach for most people who currently can afford it?

Let’s discuss relationships and language. To me, the conversation is about choice. Some families and children may want to connect and create relationships. I am a big fan of the Donor Sibling Registry for this very purpose and refer my clients to the site. I find nothing wrong with however families choose to define themselves. What I do think is harmful is for us to try to put all donor conceived children and parents in the same box.

I suspect that the reason that many children and parents want to connect is partially based on the lack of information they had on their donor. I admit that if I didn’t have pictures, video, extensive biographical and genetic information about my donor, I might feel the same way. I believe that children with this kind of information will have less of a desire to seek out the donor or to view the donor as some type of “absent parent” that they missed out knowing.

As for the term “sibling” or “1/2 sibling” I feel it puts a relationship in the head of the child by calling it that. I will tell my child that there are other children out there who had the same egg donor as he did. I’ll let him determine how he views those people through conversation that he leads. I won’t determine for him or use language that predisposes an outcome based, in my opinion, more on the parent’s thinking than the child’s. Ultimately, I will support however he decides to view those other children.

Now, to Mark’s point, I agree that children have the right to their genetic information. But, if they have that information which includes genetic testing, health histories of the donor and his entire family, photos, and in some cases even video, why would they need the person’s last name or to meet him in person? How is that going to provide them with more information? We don’t require men who impregnate a woman to whom they are not married to parent a child in this country except for minimal financial support. We don’t even require them to provide genetic or health history information. In fact, children born to single women may have received more information had their mother used a sperm donor. And the cornerstone of egg and sperm donation has been to provide a distinct line between what a parent is and isn’t to the child. The donor is in no way considered legally to be a parent and forcing them to be open to meeting the child seems to go beyond the need for information and move into one of relationship. I am fine if that is what the parties want but I do not believe it should be regulated as a requirement.

Obviously, there are lots of opinions here and more dialogue needs to happen. But, if we as parents of donor conceived children and professionals in the field cannot come to agreement, I hardly think the government will provide something that helps us or our children.

Red Huff Mar 12, 2012 9:13pm

Stuart, most reputable companies in this business say that they adhere to the limitations in the ASRM's current practice guidelines of 25 pregnancies per donor per population of 800,000 which were published in 1998. Prior to 1998 the ASRM's practice guidelines limited the number of offspring to 10 per donor, period.

You mentioned that going from the current voluntary limits of 25 offspring per population of 800,000 down to only 10 offspring like they have in Europe would drive prices of eggs and sperm to increase 10-fold.

The ASRM endorsed that 10 offspring per donor limit in its practice guidelines up until 1998 when it switched to the deBoers formula of 25 per population of 800,000. I don't recall reading that prices plummeted 10 fold in 1998, what possible justification would there be for them skyrocketing 10 fold for returning to them now? Even if testing requirements are more rigorous today than they were 14 years ago, it still would not account for the fact that prices did not fall at the same rate your saying they'd rise.

There has also to my knowledge never been a good explaination for the ASRM's sudden and drastic change of heart in changing its practice guidelines from limits that resembled a large farm family to limits that resemble infinity.

Sonia Allan Mar 13, 2012 11:40am

Dear Stuart,

I have read with interest your comments and views, and agree with you in one respect -- that the more information a person has about their 'donor' the better. Not because every donor conceived person will want it, but because they deserve to have the choice...

I would like to comment/respond further on some of the issues you raise:

1. INFORMATION
I would argue that truth/openness/honesty is called for in all instances of donor conception -- this includes a call for identifying and non-identifying information about donors -- for which it should then be the offspring's choice about whether or not they want it, and how much information they desire...

In your posts above, you clearly have already made that choice for your son, whilst being open to a degree, do not appear to be entirely so -- you stop with the 'a nice lady helped us' but do not recognise who she is. Unfortunately many others are even less open than you... How sad/worrying that those who then choose complete anonymity and also do not tell their child how they were conceived also deny the offspring a choice that they alone should be entitled to make. I understand that it may be 'uncomfortable' for the parent, but does that make secrecy within a family OK? And if the child's family are the people whom love and who care for them (I totally agree with that), why be so scared to be entirely honest with them, and give them choices rather than make those choices for them?

2. SINGLE MOTHER ANALOGY
With single mothers who conceive as a result of sexual intercourse in many jurisdictions a DNA test can be ordered by the family court -- father identified, and made responsible as you note financially in some instances... So -- the analogy to lack of information fails; we might also not want to make the analogy at all, as no one is arguing that a 'donor' should have financial obligations for the offspring or that the 'donor' should be the 'father' 'mother' in the sense of rights/responsibilities -- rather, the argument again is that the offspring should know identifying and as much other information about the donor as possible, and then be able to choose for themselves what to do with that information;

3. CONSANGUINITY
Regardless of the statistical risk of consanguinity I have met a number of donor conceived people who,
having been unable to access information about their donor/genetic relations, have a significant fear of meeting and being sexually attracted to someone with whom they are related. The 'ick' factor as you put it is of great importance psychologically -- and mental health is important to a person's whole well-being. The 'you look like so and so' comment takes on a whole new angle for some.

Place yourself in these people's position for just a moment: Eg. How would if affect you if you were not sure now if your husband is really your 'donor'; would it matter to you if you knew that your Mum had another child to someone else who she gave up for adoption, and guess what it might be him ('half-siblings') (real risk or not)? Whether or not that sits comfortably with you, I imagine it would not for many...

4. LAWS THAT BAN COMMERCIAL SURROGACY
Australia, UK, Canada banning commercial surrogacy: your conclusion -- U.S. is far ahead/advanced... Umm.. no... Rather, after extensive public consultation, consideration of the risks (including the potential for exploitation of woman, the repugnance of what seems like nothing more than 'buying'/'selling' a baby and therefore commodifying something--a person--which should not be bought/sold, etc. etc) the governments of these countries have taken an admirable stance. Not everything is or should be about money - and free markets! In Australia we also have moved to recognise same-sex families and provide for legal parentage and both members of the couple to be listed on the child's birth certificate -- surrogacy arrangements are permitted -- just not ones that involve commercial transactions, or situations where the child may be denied information about their 'donor').... Not so backwards, in fact -- I would argue -- very forwards, in placing the child at the center of the equation, and not the parents, facilitators or the money to be made...

Some states in the U.S. reflect the same -- for example:
Arizona: A.R.S. § 25-218 (2007): Arizona prohibits all surrogacy contracts, whether paid or unpaid.
District of Columbia: D.C. Code §§ 16-401 to -402 (2007): prohibits all kinds of surrogacy contracts, declares them unenforceable, and punishes violators with up to a $10,000 fine and/or one year in prison.
Michigan: MCLS prec §§ 722.851-.863 (2007). Michigan declares surrogacy contracts to be void and unenforceable as contrary to public policy, and punishes violations.
New York: NY CLS Dom Rel §§ 121 to 124 (2007). New York declares surrogacy contracts contrary to public policy, void, and unenforceable. Parties to a contract are subject to a civil penalty of up to $500. People who assist in arranging the contract are liable for up to a civil penalty of $10,000 and forfeiture of the fee received in brokering the contract; a second violation constitutes a felony.
Indiana: Burns Ind. Code Ann. §§ 31-9-2-126 to -127 and 31-20-1-1 to -3 (2007). Indiana declares surrogacy agreements void and against public policy.
Kentucky. KRS § 199.590 (2006). Prohibits compensation for facilitating a surrogacy contract.
Washington: Rev. Code Wash. §§ 26.26.011 to .903 (2007). Surrogate contracts are generally allowed but contracts for compensation are prohibited.
(NB. I have not checked for latest updates)

5. LAWS AT ALL?
'If we as parents of donor conceived children and professionals in the field cannot come to agreement, I hardly think the government will provide something that helps us or our children' -- I have been in the U.S. now for six months, and am very struck by the complete lack of trust in the elected government... in other countries we generally see our governments as the body we elect (and therefore give a mandate) to make such decisions, and provide regulation for things where especially people can't agree and there are risks involved--they (the government) draw the line, for example, by saying it is not OK to pay for a baby, and if this means that potential parents have to wait for someone willing to act altruistically, well OK, because our first concern is the child and the surrogate... Re ART generally, they draw the line... and we, who trust our governments, are OK with this, in fact many encourage them to draw the line regarding numbers of families for whom one 'donor's' gametes may be used, and the release of information to the offspring... But of course, you will have been exposed, in your line of work, to those individuals who think that they can and should be able to pay and do what they like, they believe that deciding about what is best for 'their' child is their decision (and the child will be fine with whatever they decide). These are the people who therefore fly to California or wherever in the United States it is that they can do exactly what they please... Individualism is of course far more important for some... For others, it is not...

Finally, I agree, there are many opinions, and lots of dialogue is needed -- two ways, with listening, and understanding. I over the years moved from not listening to the donor conceived people who were telling me they were unhappy, to really listening, and developing an understanding of what they say... Whilst not all will want information, how can we deny anybody the choice? And for those who do want information, shouldn't they have it -- they are the ones who are most affected, they are the ones who should be listened to!

Best wishes,
Sonia

Mark Diebel Mar 14, 2012 10:15am

Thanks Stuart for replying to my post. You ask, "why would they [donor conceived] need the person's last name or to meet him in person? How is that going to provide them with more information?"

The best answer is to ask some donor conceived persons who want to know what they are looking for. Lacking that, much of this has already been covered with adoptee experience. Not every adoptee cares or wants to know the names of their original "parents" (parent is in quotes to distinguish them from the adoptive parents). In many cases these original "parents" were only genetic parents who never knew the child. There were many adoptees who did want this information. Look it up. Check out the Evan B. Donaldson Institute for more information.

You should know this stuff already and no one should have to be telling an expert about this. I cannot understand what sort of preparation you are advancing to parents of children through donor conception when you have not apparently taken any interest to talk to donor conceived adults or adoptees who offer a counter narrative or the effort to understand it and respond to it.

Anne V Mar 15, 2012 10:17am

I am a donor-concieved person and I think that Wendy's and John's point are the best reflection of most donor-concieved people. Also, Mr. Stuart I want to respond very specifically to your opinion regarding accidental incest. Accidental incest for me and and most donor-concieved people is a very real fear and I don't think your view on it is realistic. You suggest getting a DNA test which yes, it may be helpful if you are going to marry, but how realistic do you think is for donor concieved person to get a DNA test for every date or every relationship they have? Do you how many relationships a young person usually enters into? And you expect us on every first date to say "hey I am donor-concieved so before anything we have to get a DNA test? As John said your assumptions are correct only in the case that each DC person will mate only once in their lives with only one person. At least, that is not the world in which I live in.

You, also, said that you spoke with genetists who are tops in the field. I respectfully disagree. You named only one doctor in the field and despite the fact that I am not an expert, I know that inbreeding is an issue that has been studied at lenght in human history and human inbreeding is still practiced in some countries. Most of the studies indicate that through inbreeding recesive genes who usually wouldn't pass, get dominant therefore highly increasing the risk for transmission of genetical diseases. Inbreeding was common between royal families and as a result hemophilia spread rapidly through the spanish and russian royal families. Inbreeding was also common between the Amish resulting in genetic defects and higher child mortality rate and there are many other similar studies that point out that there are risks to inbreeding. With all due respect, if I have the opinion of one expert but that opinion is not backed up by multiple years of study, I will not agree with it.

Ken Mosesian Mar 15, 2012 12:12pm

Thanks to everyone for contributing to this important conversation. I wanted to mention that Stuart Bell, who was co-chair of the board when he wrote this blog, wrote it from his personal and professional perspective, not as an official representative of The AFA. He was merely disclosing his association with The AFA.

Again, my thanks to all who have taken the time to weigh in on this topic.

Ken Mosesian
Executive Director
The American Fertility Association

Marilynn Huff Mar 16, 2012 5:29am

It took me a few days of thinking about what you wrote to understand why you believe that going to a 10 offspring limit per donor would cause prices to increase 10 fold...its because currently your agency and others that you know of are averaging somewhere in the neighborhood of 100 offspring per donor, making each new donor worth about $300,000. If the limit were 10 offspring per donor, the donor himself would only have $30,000 worth of projected revenue. I can see where that might impact an agencies ability to stay in business.

Based on the population of the greater metropolitan Los Angeles area, donors can have over 400 offspring each according to ASRM practice guidelines. I have never read an owner of an agency be so frank about the number of offspring each donor has before but I think your average of 100 per donor aligns pretty closely with what Wendy is seeing as a trend on the DSR. I still think the number is too high just because however people feel about all these people that share half their genetics the don't know who they are they can't spot them in a crowd and by rights they should all be able to..

As for defining words within your own family I think its fine as long as you realize that your not preparing the child your raising for going out into the world where words do mean the same thing to everyone who is speaking the same language. So when you said you don't use that kind of language that Wendy uses I thought to myself "English?". Its fine for people to say that they don't think of their sibling as anything more than a special friend because its clear from the statement that they know the person they are referring to is their sibling its just not the way they think of them because they did not grow up in the same household.

Wendy Kramer Mar 16, 2012 10:22am

It matters little as to whatever the ASRM, or anyone, recommends, as until sperm banks are accurately tracking the number of children born from any one donor, there can be no limits set or followed. How can you limit the number of children born to any one donor, when you don't even know how many there are? And until the industry starts caring more about the numbers, than making money, nothing will change. (Fairfax knew about the group of 100+ , as the mothers kept calling in and asking them to STOP selling the sperm.)

And it doesn't matter if Stuart and his geneticist have their opinions via statistics, numbers and calculations that random meetings are unlikely, because the truth is, that they do happen quite frequently. I was informed of another one just this week. A woman's donor conceived daughter realized years later that her donor's 2 nieces had been her swim instructors.

As I am sure many families who are looking to be educated on donor conception come to the AFA, posts like this one that are filled with misinformation and erroneous assumptions, are mis-leading at best, and dangerous at worst. Parents-to-be as well as current parents should be pointed to the peer reviewed published research on donor families. They should be listening to the folks who were donor conceived. All too often, the industry "experts" are people completely unaware of the language, the feelings, and the experiences of donor conceived people. Hey AFA, why not have actual donor conceived people on your site helping to educate parents? Why not point folks to the research, instead of saying, "...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." Is it because you don't like all the research that's already been published on donor offspring? Or is it because you haven't actually read any of it?

Why not point folks to the DSR? We have a ton of research, articles, personal stories, media stories and a discussion group where all views are expressed. Our group has learned a lot over the past 12 years and we are committed to educating and supporting our families, in addition to helping to connect them.

One last point is on the language. I can only warn parents to be very, very careful about their own bias, and to let the language be child driven. It should be them that defines the relationship between them and their genetic relatives, not us. To many parents, the donor is just a "piece of genetic material" or a "donated cell", but to our children, the donor is often viewed much differently. If we are not careful, our children will pick up on our language, (and on our fears) and they will silently understand that any interest in the donor may be hurtful to the parent, and then they will feel guilty about any curiosities they are having about the "invisible" half of them (my son's words). We have talked to many offspring who do not feel that they can talk to their parents about their longing to connect with their genetic relatives. Many are searching behind their parent's backs because they feel it's somehow a betrayal to wonder about and desire to know their biological parent and/or half siblings.

When we surveyed the group of 751 donor offspring (about half were from outside the DSR- from LGBT groups, other websites and organizations) about the language they used for their "donor" we found that many offspring used the terms "father" or "dad" to describe him:
42% used the term donor
30% used the term sperm donor
28% used the term biological father
11.5% used the term donor dad
8.5% used the term father
2% used the term genetic father
(More than one term could be chosen, as many offspring use more than one term).

I can not stress strongly enough how important it is to acknowledge and support our children in these matters. Let's allow them to define these relationships. Do I care if my son calls his donor (actually it's my donor, as he donated to me, not my son. Well, actually he was my sperm vendor or seller, because he never "donated" anything, he sold it, and I bought it!) his father, donor, or guy who helped to create me? Nope. Do I care if he calls his half sister a "sister"? Nope. Why should I care....it isn't about me, it's about his right, his half sister's right and their biological father's right to define these relationships as they all see see fit.