By admin on August 02, 2011

Can anyone tell me how many children there in the US that have been born using donor eggs?

I have been sent to pages of detailed CDC and SART reports to dig through numbers, several other websites, several documents with incomplete years and reporting information, and some records where embryo and egg statistics are combined. I am unable to come up with a number.

I am I really the first person to ask the American Society of Reproductive Medicine (ASRM) for this “magic” number? We do know that no one has any idea how many children have been born from donor sperm, as there has been no accurate record keeping by sperm banks or clinics.  But I had always heard that the reproductive medicine industry accurately tracked the number of children born from egg donation, so I am so surprised to find that no one (so far) can give me this number, after days of searching.  If anyone has this elusive number, please send it to me, and I will update this post so in the future there is a number for all interested parties to be aware of.  If the number was obvious, but I have just been ineffective in finding it, I will update my post to reflect that fact too!

Can anyone help?

Wendy


By admin on July 19, 2011

This article was written by the former Deputy Minister of Health in BC. His comment below, that donor offspring who are curious about, and seek to find their genetic relatives are committing, “an act of selfishness and betrayal” is astounding to me, given the amount of influence he had at his former position. Ok, maybe he doesn’t understand donor conception, but as Minister, didn’t he learn anything from the world of adoption? Ideas like this can only harm families, as donor offspring who do become curious, will feel that they are betraying their parents if they wish to learn more about their genetic, ancestral and medical backgrounds.

The research we just published on 751 offspring has been sent to him, with hopes of him better understanding how donor conception can affect the lives of real people. I also invite Mr.  McFarlane to visit the Donor Sibling Registry website, where we have  quite a few articles, educational materials, research materials and donor family’s testimonials.

Mr. McFarlane’s Original Article:
http://tinyurl.com/McFarlane-2011-07-15

Here is DSR member Emily’s response:

Dear Mr. McFarlane,

I have read your article in the Times Colonist regarding the recent ruling on
donor conceived children’s right to have identifying information about their
donors. I appreciate your concern for the future of the supply of sperm, the
fertility industry and the welfare of families created with donor gametes, and I
hope you will consider the following aspects of your argument:

You mention that focussing on the importance of genes risks reinforcing the
notion of foetal rights and opposition to abortion rights: this seems like a
crude leap to me. Aren’t the most strident proponents of foetal rights those
who believe that the foetus has a human existence or a soul, in a spiritual
sense. They will not be swayed by any empirical evidence, I don’t believe…

Discourage new donors: you suggest that the abolition of anonymity will reduce
the number of donors, but in fact the evidence from the countries where this has
happened does not support you: yes, the number of young students who need the
cash is much lower if they have to face the implications at some later stage in
life, but a different type of donor exists, older men who have experience of
infertility & parenthood and are willing to help others facing the same
problems.
http://www.manchesterdonors.com/blog/sperm-donation/sperm-and-egg-donor-recruitm\
ent-success

http://www.guardian.co.uk/commentisfree/2010/sep/19/sperm-donors-shortage-market\
-forces

Those centres in the UK, where anonymity was abolished in 2005 (and payment has
never been allowed) which have managed to recruit good numbers of donors under
the new rules report that many of these men even turn down the payment of their
fares and loss of earnings, the sense of helping others is reward enough. The
difference is that they need to provide counselling and support to all
applicants to ensure they understand the long term implications of their
donation, and many centres are too medically focussed to take this on.

You mention a fear that instead of anonymous benefactors, we would only get
individuals desperate for money, but the evidence points to the contrary: there
are plenty of mature and responsible men who volunteer to donate, when
approached in the right way, and these men have no fear of the ‘knock on the
door’ in 18 years’ time because they have nothing to hide, they donated proudly,
openly and responsibly.

You mention that children’s rights should not trump the rights of parents and
donors, but you forget that the children were not party to any agreement, and
yet it is they who have to live a whole lifetime with the consequences of
gamete donation. They are only children for a while, and many of the adults are
telling us what it’s like, and we should be hearing them and taking account, and
their powerless position in the initial process certainly means that we should
be putting their rights at the forefront when devising the policy that governs
donation.

I hope that you can consider these views: the world of fertility treatment is
changing and it needs to become more accountable to the people involved, for
whom it is much more than just a medical procedure.

With my regards,

Emily Engel

Then, the Author’s Two replies (with his permission):

The point about abortion is that if genetics are as important a feature of personal identity as you suggest, then a fetus meets that test – it has DNA.

Beyond that, the idea that genetics helps define identity is (in my view) mistaken. DNA was unknown when I grew up, and no-one felt less clear about who they were. The difference between us comes down to this: You believe that notions like parenthood and personal identity have something to do with bio-chemistry. I believe they have to do with family, love and caring. I imagine it takes a fair bit of courage for a man who cannot father a child, to agree to his wife being impregnated with another man’s sperm. The child conceived in that manner is all the more his, and no other man’s, because of his self-sacrifice. For that child, later in life, to go looking for the biological “father”, is – in my view, an act of selfishness and betrayal.
Best wishes, LM

The point about fetal rights is that people who oppose abortion tend to do so (this is a broad generalisation) because they associate personhood with biological features: show that the fetus has arms, legs etc., and you’ve proved it is a person. Abortion supporters tend to look for social and behavioural characteristics before they confer personhood. Arguably, proponents of the rights of AI children to know their biological parents rely on biological definitions of terms like “parent”, father” and so on. I believe those notions are only a tiny part of real parenthood.
I agree that children aren’t party to agreements their parents have made. They are, however, beneficiaries. More than that, if their parents loved and cherished them – as any parent should – it is a betrayal of that love to go looking for a “real” father.
Regards,  LM

Now, here is a response from a DSR mom that I hope Mr. McFarlane will have the opportunity to read:

I read Mr. McFarlane’s op-ed with interest, as I read all the postings on this
site with interest. Sometimes I agree and sometimes I disagree. Mostly I’ve
found that my thinking has evolved on the whole topic of donor anonymity. I did
think that the abortion rights segue was kind of dumb, but other than that, I
thought that his opinion is probably pretty prevalent in most circles. And I
thought that because many of his opinions are pretty close to what mine used to
be before I became a part of this community (or what they might have been if I’d
given any serious thought to the question of donor anonymity).

And isn’t that how it so often is… you don’t really get it until you walk in
someone else’s shoes. I’m pretty new to this community. My donor conceived son
is just two and a half years old. If you’d asked me five years ago what I
thought about anonymous donors, I’d probably have answered something along the
lines of “so what.” I’d have said that family is the parent(s) who raises you.
I’d have said that making a deposit in a cup over a dirty magazine should be
explanation enough for any child as to why the man who gave his biology is not
family. I might have also empathized more with the college student who didn’t
want to throw some giant unknown into his future by committing to release his
identity to any biological offspring.

But then just over three years ago when I embarked on this journey, I was forced
into a different mindset. I was forced to think about the most important person
of all – the child I would be mothering. I was forced to imagine how he might
one day view things. And without having read a single article on the topic, I
came to the firm conclusion that I needed to give him the possibility and the
right to know as much as possible – and that meant I had to choose a donor who
consented to release his identity.

I know that disagreements will continue. People have different views, different
experiences and different motivations. But it’s hard to imagine that the tide
won’t keep pushing toward discouraging or ending donor anonymity. It’s hard to
imagine that courts won’t side more and more with those who didn’t have a voice
when this all started – the DC kids and adults. It’s hard to imagine that as
more parents embark on the journey of donor conception, they won’t listen to the
statistics and the overwhelming empirical evidence that their kids may one day
want to know about their biology – and that these new parents won’t demand more
and more open donors. It’s hard to imagine that as more stories are told, that
public opinion won’t evolve as my opinion has evolved.

I guess that’s it… just thought I’d add my two cents!


By admin on July 01, 2011
An open letter to the ASRM from Susan Kane, a donor-conceived person, in response to Todd Essig’s commentary (Balancing the Rights of Donor Offspring With Those of Donors: But What About Parents? Forbes. June 30, 2011), which was a response to Wendy Kramer and Naomi Cahn's BioNews commentary (The Birth of Donor Offspring Rights in the USA?).

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As a donor-conceived adult, I appreciate Todd Essig’s observation that “law is a blunt instrument” for managing the gap between technology and social norms governing its use (Forbes, see above link).

And yet, law is exactly where we turn when people and industries fail to regulate themselves. And, despite Essig’s feeling that gamete donation — with us for over 100 years — is “new,” we have decades of evidence that the current norms and regulations governing gamete donation in the United States are failing everyone.

Following are three quotes from donor-conceived adults from this week’s article published in Human Reproduction entitled: “Offspring searching for their sperm donors: how family type shapes the process.”

“It makes me angry that I am denied the basic right of knowing who my father was and what ethnicity I am.”

“I am curious as to what my biological father is like, do I have any siblings, what were his parents like.”

“The man who raised me is still my dad, but I’m pissed off ... I’m missing half of my genetic medical history.”

It’s curious to me that masturbating into a cup or donating eggs seems to Essig an entirely different thing than the more commonly known way of conceiving a baby but not raising it — namely, adoption.

Which part is so confusing? Is it the cup? The presence of doctors? The fact that this is an intentional act on all sides? Does the payment make it confusing? Is it all that pretty, shiny, technology?

Let me ask you for a favor. Stop looking at the cup. It doesn’t have the answers we need. Look me in the eye instead. As it turns out, I’m just like every other human. So, pull out your Psych 101 text and keep it handy while we chat. It applies to me too.

As anyone in the mental health field should know, decades and decades of adoption research has taught us that secrecy in families causes damage. It has taught us that learning that your parents are not your parents late in life wreaks havoc on your basic sense of trust. Most of all, adoption has taught us that genes matter.

They don’t matter more than love. I never said they did. But I challenge you to find an adoption professional in North America today who would tell you that genetics is irrelevant in family creation. Genes matter — today more than ever.

Genes matter to donor families. These families have specifically pursued infertility treatment rather than adoption. The fertility industry *exists* because genes matter. Allowing people to pass on their genetic material is what fertility treatment *does*. It amazes me that genes can matter to the families and doctors you serve and yet both you and Allison Rosen can’t believe that they also matter to *me*.

Who exactly gets to decide whether donor anonymity — being cut off from part of your genetic heritage — matters? Is it the parents of donor children? Is it the donors, kind people that they are? Doctors? Forbes’ columnists? Mental health professionals?

The answer, Mr. Essig, is that we do. We get to decide whether it matters to us. And the answer is: it does.

I’m sorry that your professional group chose not to learn anything from adoption research, but I’m here to tell you that the kids are all grown up. We’re not children under our parents’ care — we are teenagers, we are college students, we are the grown parents of our own children. We’ve thought about this system that you so carefully constructed and we’ve decided that it sucks. I’m sorry.

I know that you’re worried about the families and donors you counsel. I appreciate your concern. But I want you — the expert — to look ahead on their behalf, to help them think about the teenager, the college student, the parent. Your job is to advocate *not* for the family sitting before you, but for the family they are about to become — the one that includes a donor child, to whom genes matter.

And if the ASRM had done this, there would be no need for a law in Washington State — because donor anonymity would no longer exist. But you failed to advocate for us. You chose convenience over conscience. You chose the present tense over the lessons of history. And so we have stepped in to do your job — to advocate for the long-term mental health of donor families. We plan to create a new system that does not pit the needs of children against their parents or their donors. And there will, unfortunately, be conflict between us — until you start listening to everyone you are supposed to serve.

Listen, Mr. Essig. I’m not an angry teenager. I’m a 43-year-old woman with two children of my own, also conceived by DI. And what I and other DC adults are telling you, and other members of the ASRM, is that you are *wrong*. You are totally, entirely, and dangerously wrong.

Your policies are wrong, your thinking is wrong, and most importantly, you are on the wrong side of history. I’m very sorry to be the bearer of bad news. Everyone did the best they could, but the system is terribly flawed and we all hate it. We’re telling you to change it now, before we sue.

There aren’t many “older” adults like me. We’re everywhere, of course, but you can’t organize a group of people who are dreaming. But there’s an entire *army* of DC adults coming of age, right now, as we speak. Do you really want to fight the very children you helped create — in court?

It’s your choice. Future generations of textbook writers will judge your actions. When social norms fall behind technology, we need to create them, not wring our hands and wonder what will happen. I’ll see you on the battlefield of history. May the best ideas, the best practices, the best path forward — win.

Susan Kane
Boston, MA
July 1, 2011