Sunday, December 17, 2006

It's All in the Genes, Except When It Isn't

It's All in the Genes, Except When It Isn't by Liz Mundy, in today's Washington Post Outlook section gave me pause. She is working on her forth coming book: "Everything Conceivable: How Assisted Reproduction is Changing Men, Women and the World" (Knopf).

She takes the position that we are speeding past the issue of genetic connections too quickly in understanding what defines a family. I don't disagree that there is an industry out there that encourages couples to move to quickly move to DE as the logical progression after failed IVF but how or why does that necessarily lead to the conclusion that as a society we are failing to understand the genetic connection in defining family? Since when is that the definition? Sometimes the genetic connection is a curse not a gift. I've often wondered how I ended up with my parents, we seem such an ill fit - the answer is genetics. And all the personality traits I've spent 10's of thousands of dollars to unlearn, are, at least in part, due to genetics.

Genetics does play a role in identity but so does environment and childhood. DE is not really adoption even though some would call it that but it is a means to a wanted ends. And yes, I would like to have a child that has my physical traits (call me a narcissist) but what I can give it beyond DNA to me is far more important. IF anything my DNA is not the best thing I have to offer - predisposition to depression and anxiety - how are these gifts?

This article seems to suggest that those who choose to embark on the journey of using Donor Egg or donor sperm do not fully comprehend the implications of what we are doing. These are not decisions that anyone takes lightly - they are painful and gut wrenching and I find this article insensitive to those of us who have been brave enough to seek parenthood when it has not been easily handed to us.

If you want to respond directly to Liz Mundy here is her email:

Here is a reprint of the full article:

It's All in the Genes, Except When It Isn't

By Liza Mundy
Sunday, December 17, 2006; B01

There's a lot we don't know about the pregnancy of Mary Cheney -- but a few things we do. We know that the vice president's openly gay 37-year-old daughter is expecting a baby whom her parents are happily preparing to welcome as their sixth grandchild. We know that she plans to raise the child with her longtime partner, Heather Poe. And we know that there must be a man involved somewhere -- either a friend or acquaintance (a "known donor") or a donor from a sperm bank.

In short, we know that this pregnancy involves what's called, in the fertility business, "collaborative reproduction."

That's the trade term for a situation in which a couple (or a single person) conceives with help from a third party who probably won't be involved in raising the child, but who agrees, as one egg broker put it, to "genetically contribute to the conception process." It's a situation unprecedented in human history, but now common to the point of being commonplace. Yet these technologies are setting in motion a social experiment that will unfold over decades, creating hundreds of thousands of families in which the role of genetic ties will be newly tested -- and the meaning of family reevaluated.

In the United States, donated sperm is used in 80,000 to 100,000 inseminations each year. In 2003, at least 15,000 in vitro fertilization procedures -- in which the gametes, a woman's eggs and a man's sperm, are united in a petri dish and the resulting embryos are transferred into a uterus -- were performed with donated eggs; that number grows by 20 percent annually. More than 1,000 babies are born each year through surrogacy, in which a woman carries a child for another woman or, increasingly, for two gay men.

These explosively popular science-enabled multi-parent arrangements are altering our understanding of what parents are and how families can be formed. And they're confusing our thinking about genetic relationship and its importance to the parent-child bond. Collaborative reproduction is becoming widespread at precisely the moment when we've become ultra aware of how genes run the show in the unfolding of a human being: controlling everything from physical attributes such as height and hair color to a predisposition for certain illnesses to a tendency toward shyness or a taste for fine wine.

Interviewing hundreds of families for a book on assisted reproduction, I've been struck by how conscious people are of the power of genetic inheritance -- and yet how bewildered they are about how a missing genetic connection might affect their family.

Reproductive medicine and the profit-making industry that has grown up around it send a powerfully mixed message, encouraging parents to accept that genes are crucial to the formation of their children, yet irrelevant to the formation of a relationship with those children. Genes matter, the message is, except when they don't.

"Let's face it: Donor gametes is an experiment," one fertility doctor aptly put it. "Who the hell knows how it's going to turn out?"

An irony of assisted reproductive technology is that it was invented to help infertile couples have biological children, yet quickly became a way for people to knowingly conceive children who would be biologically related to just one parent.

Only six years after IVF first succeeded in 1978, with the birth of Louise Brown to a British couple, doctors discovered that it was startlingly easy to achieve a pregnancy in a woman by using eggs from another. By the 1990s, egg donation had caught on as a way to help women in their late 30s and 40s whose eggs were no longer viable. So popular is egg donation in Washington that one clinic scours rural Pennsylvania for donors. The area's more than 15 clinics compete with ads hyping the quantity and quality of available donors.

Meanwhile, sperm donation has been around for more than a century. The first known procedure was performed in 1884 by a doctor who inseminated an anesthetized patient with sperm from a medical student, without asking her permission or telling her afterward. By World War II, donor sperm was a routine "treatment" offered to married couples. In 1992, a variant of IVF in which a single sperm cell can be injected into an egg made it possible for many infertile men to have biological children. Since then, single women and lesbians have become the majority of the clientele seeking sperm donation.

People selecting a donor are bombarded with information about the donor's likely genes. Web sites for sperm banks and egg brokerages invite prospective parents to sort anonymous donors based on ethnicity, College Board scores, personality tests, shade of skin and curl of hair. For a fee, they can order childhood photographs or scrutinize a handwriting sample. "One of them couldn't spell; she spelled 'Catholic' wrong," one mother told me wryly. She rejected that donor.

The message is that genetics are everything -- everything -- in the formation of your child. And parents of course believe they owe the child the best genes. As one gay couple put it: "What are you going to do -- get someone with a 1550 [SAT score], or are you going to cheat your child and get them a mom with a 1210?" In choosing their egg donor, they made a decision tree assigning values to attributes they were looking for.

Yet even as these genetic profiles are being posted and peddled, the importance of genetics when it comes to parenting, or to the child's own psychological and emotional growth, is downplayed, if not ignored. The message here is: Your child won't be related to you, but she will still love you, no problem. Every day, families are being formed by parents trying to hold in their heads the competing notions that genes, while important, aren't. Genetics matter -- except when they don't.

Is gamete donation like adoption? "I've always looked at this as adoption that is run by the medical profession," says Bill Cordray, now in his 60s, who is part of a group of donor offspring agitating for the right to know their donors' identities, arguing that people denied that knowledge are unable to understand themselves. Accepting this argument, some countries, such as Britain, have banned anonymous donation.

But in the United States, many egg and sperm brokers disagree. They point out that adoption involves the grief of relinquishing an actual baby. In donation, nobody's relinquishing. Everybody's happy. What a child needs, they say, is not a relationship with the genetic parent, but a coherent narrative about the way he or she was born.

Yet the industry tacitly recognizes that genetic connection can matter. In the late 1980s, a surrogate in New Jersey contracted to be inseminated and to surrender her own biological offspring to the father and his wife. But after giving birth, she didn't want to give up the child. A court forced her to do so -- in the famous "Baby M" case. As a result, most surrogates now are "gestational carriers," bearing babies created with eggs that are not their own. Everyone assumes that having no genetic relationship will make it easier for a surrogate to hand over the baby. Genetics don't matter -- except when they do.

In two-parent families, many parents still don't tell children they are donor-conceived. "Parents are afraid that if they tell the child they are not the genetic parent, the child will love them less," Fay Johnson, a longtime surrogacy broker, told me. Though the donor has no legal claim, parents worry that he or she possesses some kind of unarticulated blood claim, and they fear that person's power. "I'm the dad, damn it," I was told by one man, who thought that if his sons grew up and wanted to track down their donor, it would be a sign that he had failed as a father. One mother told me about dreams in which her anonymous egg donor knocked on her door, asked to see her son, and left taking both the son and the woman's husband with her.

And of course, children don't always see things the way their parents do. The Sperm Bank of California, a small nonprofit established in 1982 to serve mostly lesbians and single women, has pioneered an "identity release" program that entitles offspring, at 18, to learn the identity of their donors. In a study conducted as the first deadline for tracking down donors approached, the bank found that though most children were comfortable with their origins and regarded the people who had raised them as their parents, most still wanted to meet their donors. And many more than anticipated wanted a relationship with the donor.

Collaborative reproduction has brought happiness to many, and children to millions. There aren't enough adoptable children in the United States to meet people's desire for kids and family life. And there are men and women who are comfortable giving away an egg or sperm. The result is children who, by and large, will be glad to have been born.

But it's wrong when an industry stokes the genetic anxieties of would-be parents yet fails to provide the support to help us all figure out how to deal with the ways in which genetics do affect family ties. It's also wrong when would-be parents get shuttled along too quickly. Some women now go through IVF one or two times and, if it fails, are encouraged to move on to egg donation as if it's merely another step in a medical process.

Like adoption agencies, clinics need to acknowledge that you can't just slip a new set of genes into the conception process and go on as though nothing had happened. They need to connect parents with counselors who know the research. Egg-donation recipients typically receive an hour's worth of counseling; sperm bank patrons often get none. Yet these families are going to unfold in unexpected directions.

Not long ago, I interviewed a mother who had conceived twin daughters with the help of an egg donor. At a wedding, she ran into the donor, who was a casual acquaintance. The woman did not want children and was glad to help someone who did. But the donor's parents were also at the wedding, and the girls' mother noticed them looking at her twins. They were the girls' genetic grandparents, looking, a little wistfully, at the granddaughters they would never have.

What is a donor? What are a donor's parents? The reproductive field needs to acknowledge that these questions exist, and that the answers matter. After all, the Cheneys won't be the only genetic grandparents of Mary's baby. Presumably, there will be another set out there -- somewhere.

Liza Mundy, a Post reporter on leave,

is author of the forthcoming "Everything Conceivable: How Assisted Reproduction is Changing Men, Women and the World" (Knopf).

1 comment:

Rachel Inbar said...

I just wonder if DC children might have an advantage - they have genes that may drive them one way, but examples of parents that offer another option. And, as you said, sometimes the genes we're able to offer bio children aren't optimal...

I think the most troubling thing she's written is that people are taking donor conception too lightly and not understanding its implications. Is there really a specific set of implications? Is there one set for children who are adopted? One for children whose mothers died & were raised by step-moms? One for children born by extra-marital relationships? One for children of single/divorced moms in which the father disappeared? (Just to name a few examples)

It seems highly unlikely that the implications of a bond (or lack thereof) to the genetic family is the same in every situation and for every child.

If I had other siblings, of course I'd be curious to meet them. Does this mean I'm lacking something in my life? Would that prove it? Well, if I can say that now, knowing there aren't any others, I guess it wouldn't mean anything at all... So the fact that most children who learned of their genetic origins were interested in meeting a bio parent seems trivial to me. Who wouldn't be curious?

OK... sorry for getting carried away :-) I guess my courses in Research Methods are getting to me...