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

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"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.

Around the Web

In vitro fertilisation - Wikipedia, the free encyclopedia

In VItro Fertilization (IVF) Treatment for Infertility