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Robert Klitzman, M.D.

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'Who Made Me?' The Ethical Issues That IVF Families Face

Posted: 11/16/10 08:56 AM ET

"I just saw a married couple who don't want to tell their daughter that she was created from another man's sperm," a psychologist who worked with infertile couples recently told me. "I don't know what to do. What do you think?"

The recent award of the 2010 Nobel Prize in Medicine to Dr. Robert Edwards recognizes important research that led to the development of in vitro fertilization (IVF). But the work that he, along with his late colleague, Dr. Patrick Steptoe, conducted at Cambridge University raises profound questions that, with the evolving modern family, many doctors, patients and potential parents continue to struggle with decades later.

This psychologist wrestled with one of the most difficult quandaries that has recently emerged: whether to tell children born through IVF, using a third party's egg or sperm, that they were created in this way.

A friend of mine in her early 40s recently hired two women: one to donate eggs, and another to carry the embryo that was then made using my friend's husband's sperm.

I wondered what, if anything, my friend would eventually tell her children about their birth.

"I don't know," she answered, with an embarrassed laugh. "I haven't thought about it. I guess we'll cross that bridge when we get to it."

But that may be too late.

Research on children who have been adopted indicates that they do best psychologically when they are told of their origins early on in some way, rather than learning this fact only later in life. Recent research by Susan Golombok at Cambridge suggests that over the long term, children created through donated gametes (i.e., eggs or sperm) also fair best if they are told while young.

Yet not surprisingly, most parents don't want to give such information to their children. Men often feel that they are less manly because they could not produce their own offspring. Parents frequently feel that their child would love them less if he or she finds out that someone else's gametes were used, that the child would no longer consider this couple to be his or her biological (i.e., "real") parents. Yet these children, if learning this information only later in life, may then feel betrayed and accuse these parents of having withheld vital information.

Such knowledge may be important both medically and socially. A donor's genetics and family history can be critical in disease prevention and treatment for the child.

We all value the stories of where we came from -- where we were born, and who our parents are. Every time I pass the hospital where I was born, I think, "I was born there." It looms large in my mind, somehow imbued with mystery and magic. Thus, many of us would want to know the identities of our biological parents.

These issues are of growing importance since more children are being born using donated eggs and sperm. Of all couples, 10 percent are infertile. Currently, of all births in the U.S., 1 percent use some form of Assisted Reproductive Technology, such as IVF and/or donated gametes. In Denmark, the number has already risen to 7 percent. Eventually, in the U.S. and other Western countries, 10 percent of all births will probably involve these technologies.

But with time, these expanding applications of the work of Dr. Edwards and Dr. Steptoe pose new and evolving questions and fears. What exactly should children born using donated eggs and sperm be told? A six- or seven-year-old might be informed merely that, "There are many ways to have a family. A nice man helped us to have you."

But many parents don't want to disclose at all, and either remain silent or overtly lie. Given the potential importance of family medical history for disease prevention and treatment, doctors may in certain cases need to override parents' decisions and tell adult offspring themselves.

In the U.S., a Donor Sibling Registry now exists for individuals who have already been told by their parents that they were conceived using donor gametes. But researchers have discussed the need to establish online registries of donations so that everyone, on reaching 18 years of age, can themselves check to see if they have been conceived in these ways. Offspring might then learn that their parents are not their biological kin and had withheld this information.

Once children know that they have a third, biological parent, they will probably want to know who it is, and often want to communicate with or meet this donor. Yet these donors may vary in whether they want to meet or have a relationship with these children, and if so, to what extent. These children may ask for financial support from these biological parents. These offspring may not have a legal right to receive funds, but donors may feel psychologically and/or socially connected and obliged to help. Donors' parents are often thrilled to discover the existence of grandchildren.

To avoid ambiguities, Great Britain recently decided to ban all anonymous sperm donation. Yet, as a result, the number of donors has plummeted. In the U.S., gamete donors can still choose to remain anonymous, and most do so. A minority leave open the possibility of future contact. Physicians and possibly regulations could consider encouraging the possibility of such communication, rather than strict anonymity.

The U.S. also allows compensation to women for donating eggs, while Great Britain and many other industrialized countries do not. But markets for eggs and sperms are growing here, in which infertile parents pay more for eggs from donors with higher SAT scores -- raising the specter of eugenics.

The psychologist who spoke with me, and many others, struggle almost every day with these quandaries. More awareness and education about these evolving issues among health care providers, policy makers, patients, offspring, and the public at large is much needed. I hope that this couple, and others like them, might eventually be able to tell their children. But what will happen is unclear, and partly up to us all.

"Could you explore with these parents," I asked her, "why they don't want to give their daughter this information? I'd imagine they might feel shame, or fear that their daughter will love them less."

"They had a hard time getting pregnant," she replied, "and are just glad to have a child. They just want to get on with their lives. But," she added, with a slight smile, "I'm going to try."

I hope she succeeds.

 
 
 
 
 
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08:59 AM on 11/22/2010
This is a human rights issue...every human deserves the right to know and own their biological identity. Until adoption and AR law and ethics catches up with the technology and policies, human rights are being violated.
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MaryanneAZ
Raven enjoys the Halloween candy!
06:30 PM on 11/20/2010
In AZ, we were told that legally we could keep quiet and list ourselves as birth parents on our child's birth cerificate or my husband could choose to adopt the baby after birth (acknowledging the lack of biological connection). We chose to keep quiet and list ourselves as birth parents. However, we did tell our son very early on about his special other dad who helped us have him and that no child was ever more wanted than he was and is. He was and is one of the most wanted babies born to a couple. He is now a very well-adjusted 25 year old who has no yearnings to know the donor.
03:05 PM on 11/22/2010
...except for possible health matters such as needing an organ transplant or some other DNA-related issue, etc. However, I'm very happy for the young man that he is well-adjusted, wanted, and loved by his family.
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Thaag Tidestalker
Axial Tilt: the Reason for the Season!
07:20 AM on 11/20/2010
I was adopted in 1970, a year after I was born. One of my earliest memories was when my parents sat down and told me that babies come from women's tummies and that I came from a woman not my mother. I've never had a serious problem with this and I understood it pretty easily from the get-go. The only real difficulty is when I have to fill out a medical history form and have to say "I don't have a clue." I know people who were told in their late teens the truth about their origins, and they had so much difficulty dealing with it that they went from great young adults to lashing out, burying themselves in drugs and alcohol...you get the picture. I've watched the trainwreck in front of my eyes. So yes, the findings of the study don't surprise me at all.
06:41 AM on 11/20/2010
My parents used donor sperm and I am grateful to them for not telling me until I was 21 years old.

I think it would have been a difficult concept for me to grasp as a child and knowing as an adolescent would have given me an explanation for the lack of kinship I often feel with my dad. I might not have worked to bridge the gap had I felt there was a biological explanation for the sense of distance between us.

My only regret in being told so late is the guilt and anguish my parents and especially my dad went through in deciding when to tell me, and I know my dad is still working through this. If I had been able to be completely selfish about it I would not have minded never knowing. On the positive side, knowing how hard my parents worked to conceive me makes me feel incredibly wanted and loved. Maybe emphasising that message at an early age could be effective.

It would have been useful to know my paternal health history but no records are available.

So many people struggle with identity and feel like an alien within their biological families. People risk over-attributing normal crises to biological incompatibility when it is present. In the end I feel it's a pointless argument. I wouldn't be me had my parents not conceived me when and how they did and that's it.
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KarlaElisa
The atmosphere is Toxic
08:10 PM on 11/17/2010
In this day and age of overpopulation, I am afraid I really frown on this stuff. If it doesn't matter if one of the parents is absent, why should it matter that there is any biological connection? Adoption seems like a more compassionate, responsible choice, in my humble opinion.

Before you all jump on me, understand I am not forcing my thinking on anybody. I accept that this is legal. It's just that I feel poorly about it.
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Thaag Tidestalker
Axial Tilt: the Reason for the Season!
07:23 AM on 11/20/2010
I actually agree with you, especially as an adoptee born from an unwed teenager. I feel that the people who reared me are my real parents. I would love to see more couples who are unable to conceive adopt.
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MaryanneAZ
Raven enjoys the Halloween candy!
06:33 PM on 11/20/2010
There are many reasons why people do not adopt and they are generally road blocks such as money, age, health, etc. More people would adopt if it weren't so difficult.
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MrsGreebers
02:13 PM on 11/17/2010
This is simple. Information about their origins is every person's birthright. Period.
01:59 PM on 11/17/2010
I know an IVF kid. He always knew he was a donor product and thank god for that. However, his mother is emotionally unbalanced and he has no other parent to rely on. Another issue for him is not knowing whether the girls he's dating (he's in his teens) are potential half siblings. His mother will not reveal the doctor or clinic to him so he cannot register and find the siblings he wishes he knew. The doctor appears not to have limited the number of times a donor could father children and may well have fathered many children himself within a 5 year period so the issues with accidentally dating/sleeping with/marrying a half sibling in this midsized city are a real issue for him.
11:36 AM on 11/17/2010
I believe you have unwittingly repeated a common assertion that turns out not to be true--the point about the number of sperm donors in the UK declining after the law was enacted. If you look at the states from the HFEA (the agency that collects these) they don't support your statement. I've puzzled over this common error for a while and think I found an explanation. See http://julieshapiro.wordpress.com/2010/09/21/uk-sperm-shortage-explained/

After speaking to a number of people in the industry, I think it's more accurate to say that if you donors who are willing to have identifying information provided to children conceived are different--they tend to be older. They tend to have children of their own. But I don't think it is correct to say that there aren't enough of them.
07:16 AM on 11/17/2010
It is wrong to deliberately create children separated by one or more of their biological parents. It is is worse to not tell them about it.

There's stories from the donor-conceived here:
http://anonymousus.org/index.php
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nikanj
free the fnords
12:53 PM on 11/17/2010
Thank you for posting a link to your site.
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MizFlagPin
Standing for Truth, Justice, & the American Way
06:49 AM on 11/18/2010
Thanks for posting your website. I just finished reading all of the stories. Very fascinating and I can totally relate to how each person feels.

Wishing you much success in this very worthwhile endeavor.
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sweatermoose
I saw something nasty in the woodshed.
12:37 AM on 11/17/2010
As an adoptee, I am very fortunate. I have no memory of a time that I did not know I was adopted. My parents explained it very simply, and positively, and I am very grateful for that. I understood that there was a real reason that I did not look like them, and had different interests. It did not make me love them any less; but if they had lied to me, or withheld the truth from me until I was a teenager or heaven forbid, and adult, it would have destroyed my trust in them.
I think it is cruel to lie to children about this topic, or withhold information. Actually, I think it violates people's human rights. Everyone has the right to know the truth about their birth, and their origins.
It is my belief that people who become parents using IVF should receive counseling to come to terms with their infertility grief, so that they do not unconsciously harm their children with it by lying to them or dismissing their right to know who they are.
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frnd74
09:28 PM on 11/16/2010
As an adoptive parent, I am horrified that parents would lie to their children about use of an egg or sperm donor. I don't have the right to keep my child's biological history from her - it is hers, not mine. Consequently, we work hard to maintain a completely open adoption in which she gets to see and spend time with her birth parents. She knows who her parents are, and she knows who her birthparents are. No confusion; just a kid who is loved by more than one set of parents. Children conceived from use of donor eggs or sperm have a right to know. To me it's not even a case of "genetic roots" or "health information"; it's a case of respecting the right of your child to information that belongs to them.
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09:27 PM on 11/16/2010
We have to put the best interest of the children first. Is it right that the fate of some children is being decided by over-breeders and the morally obtuse fertility doctors who enable them? Children should not be produced in clutches so large that the necessary parental attention cannot be given to each child. And women who already have six healthy children should never be considered for IVF.
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MrsGreebers
02:22 PM on 11/17/2010
The VAST majority of IVF users are trying to have ONE baby. They accept around a 25% risk that a successful conception will result in twins and much smaller risk of higher multiples. The Chicago Tribune reported several years ago that 1 out of every 16 eggs extracted will become a take-home baby. The University of Chicago, for example, was putting 2-3 eggs into 38-year-old women. They were going for health of the eggs not quantity. But I'm sure sometimes the financial conditions impose pressure to try to up the odds of success.
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cheryl tobin
Alpha Dog with my pack!
04:26 PM on 11/16/2010
A friend of mine decided not to tell her blond haired, blue eyed boy he had a different father in a family where everyone else had brown hair and brown eyes. He struggled with the feeling that somehow he was different but the family all discounted his suspected truth. Sadly, after many years of struggling with drugs and alcohol he committed suicide. I don't believe in lying to people even if we make the decision that it is for their own good. Lying or sins of omission seem to always cause major problems even if the truth is never exposed. Maybe that didn't contribute to his suicide but feeling something is different and everybody lying to you doesn't contribute to mental health.
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bigmovieman
living free without the 1st and 2nd amendment
01:45 PM on 11/16/2010
sometimes I wonder myself it it would have been better for me not to have known.

But In the end I am glad they did.

I still try to treat my dad the same...
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MrsGreebers
02:22 PM on 11/17/2010
"Try?"
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bigmovieman
living free without the 1st and 2nd amendment
04:05 PM on 11/17/2010
nothing is for certain.

But I am pretty sure I have been successful.
01:26 PM on 11/16/2010
I can't believe some parents actually don't tell their children. Or tell them when they're in their teens. They're creating a situation for nothing. They should just be told naturally, as soon as they can understand. And not as some big announcement, just in a matter of fact way.