Fertility Clinics: It’s Time to End Secrecy

The New York Times features a welcome article describing a budding movement to allow sperm and egg donors and recipients to learn of each others’ identities. This may appear to be a tad obscure for those of you who produced your children in the way Nature originally intended. But I assure you that for those of us who’ve been through fertility treatments using egg donors (in our case), this is NOT an academic argument. This is important.

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Brought to you by the miracle of egg donation

We produced our three children (a nearly 5 year-old and 14 month-old twins) through egg donation with the help of the NYU fertility clinic and the estimable Dr. Jamie Grifo. When we went through the psychological counseling portion of the process, a staff psychologist talked to us about the anonymity issue. We couldn’t know the donor’s name or personal identity. She couldn’t know ours. We were told her age, nationality (Israeli in both donors’ cases), weight, height, education, and family and medical history. I’m certain that this policy appeals to a certain set of parents who may not want their children to know they are egg donor babies and who fear that such knowledge might stigmatize them.

I think this attitude is a holdover from old attitudes toward adoption in which the birth mother was not allowed to know or contact the adoptive parents. Adoptive parents feared the impact that knowing their birth mother might have on the child. They feared it might somehow turn the child against them. Or they feared the birth mother might meddle in the child’s life or become overly possessive. From what little I know about adoptions, I believe this may be changing (if it hasn’t already).

It needs to change too with fertility treatments. Why?

The Times article gives numerous reasons most of which are entirely unpersuasive (leading me to believe that Amy Harmon, the author, has never been anywhere near a personal experience with infertility):

How would anyone know if a sperm donor advertised as a Ph.D. who does not smoke is really a chain smoker with a high-school diploma, for instance? Or how many offspring a donor might have? With neither party in a position to verify the number, there may be little incentive for sperm banks to impose limits on their best sellers – whose offspring might number more than 100 – leaving children at risk of unwitting incest.

Many also complain that they are at the mercy of the fertility industry for important information – for instance, that a donor developed diabetes in later life – that might signal health risks. And some critics are pondering the larger question of whether anybody [ed., a sperm/egg donor wishing anonymity], having already decided that one’s children will never know where they came from, has the right to bring them into the world. Many children born from donors are haunted by questions of identity, for which they blame companies that require anonymity as a condition of buying their sperm and eggs.

With all the stress and complexity involved in going through fertility treatment, if the most critical concern you have is whether your child will commit incest with the child of the same egg or sperm donor–well then, you’ve got a lot of time on your hands to worry. Others of us are grappling with issues that seem, at least to me, of greater import.

Knowing the donor’s genetic and medical history is important. Allowing contact between donor and donee may help in giving a fuller picture of these factors. Especially so, if there are unusual medical or genetic conditions involved (for example, through the genetic testing involved in our fertility treatment I discovered that I am a 25% carrier for Cystic Fibrosis). That would be important information to know. But I don’t think you go into a campaign for opening up the donation process by claiming you’ll save many lives. You may and that’s certainly good. But it just doesn’t strike me as the most powerful reason.

But I think the last reason listed in this passage is a very important one. We all want to know where and who we come from. Personally, I don’t believe I’m being fair to my child if I tell him, or allow him to believe that his mommy and I are his birth parents. My son is too sensitive and aware for that to work for very long. Somehow, (I don’t know how) he’ll find out something’s amiss. Then he’ll demand to know what it is. I couldn’t bear the idea of having tried to shield him from some anticipated pain (some shielding parents are afraid their children may be bullied in school), only to find that I myself caused real pain. To be clear, these are all decisions that must be made by each couple. Some couples disagree with my approach. That’s their right. You can’t prejudge these situations. I can only say what makes me feel like I’m doing the right thing.

Some egg donor parents and even those reading this may raise an eyebrow at my including my son’s image here, which in turn reveals to the world his identity as an egg donor baby. They may say that should be his decision as to whether to tell the world or not. But my perspective is that attitudes and rules need to change. Trauma and suffering need to be eased. If being candid with the world may help a single other person or couple facing this to realize they don’t need to shy away from this subject or protect their child from it, then it will have made it all worthwhile.

Returning to the issue of whether such children should know their donors, I also try to put myself in my children’s’ shoes. If I were an egg donor baby would I want to know about the egg donor? Of course, I can’t be sure until I’m in that precise situation. But given the great interest I have in learning about family ancestors I’ve never even met, I’d say it’s a good bet that once I became a teenager or adult I’d want to know about the donor. I might want to meet her if she was willing to meet me. Basically, I want to give my children the option of being able to do this should they choose to.

So I never agreed with the NYU fertility clinic policy of absolute anonymity. I’ve checked the clinic website and haven’t been able to find a description of this policy. I hope they’ve changed or at least that they’re contemplating change. On these and many other social issues, the world is generally becoming a more open place. The greatest possible disclosure is often the best policy in these and other similar situations. There are many more traditional people who don’t feel comfortable with such openness. But that’s the social trend and I think it’s a right one.

I totally disagree with this “shut the door” perspective represented by a fertility specialist:

“We want the recipient to feel she’s getting genetic material from the donor with which she can make a baby that is very much hers,” said Dr. Brian M. Berger, director of the donor egg program at Boston I.V.F. “If you then try to create a personal relationship between donor and recipient, it becomes more murky. The donor has an investment which we’d rather they didn’t have.”

In many conversations I’ve had with my wife one point she repeats over and over is that she is CONSTANTLY aware that while the children are ‘hers,’ they are not biologically hers. That of course, is a personal pain that she will live with and hopefully learn to come to terms with. It doesn’t mean she won’t love them. It means that it’s an issue that is always there. Why try to paper over one’s awareness of such a fact? Why not embrace the issue to the extent possible by meeting the woman who enabled you to have the miracle of birth? I’m not saying this is for everyone. Clearly it’s not, but it’s conceivable that meeting our donor might be a positive experience for my wife.

Dr. Berger gets things completely wrong in his thinking about the donor’s potential negative role. Why not think of the donor as someone who may very well play a very positive role? Certainly, there may be situations where donors cannot play constructive roles. But if there safeguards for both sides to allow them to end the process of getting to know each other as soon as one party senses this coming on–then haven’t we done as much as we can to protect donees from unwanted intrusion? Besides, anyone who knows from the get-go that this type of meeting doesn’t interest them can opt out from the start.

I say: give egg donation babies the option of knowing their donors should they so choose.