Donor/IP Confidentiality

Just how anonymous are anonymous DE cycles really? Not very much so, I quickly discovered. Unfortunately for those donors and IPs who really care about remaining unknown to one another, confidentiality seems to be superficial at best.

The first thing you do when you sign up with an agency to be a donor is fill out forms with your contact information. You provide your social security number. Medical records. Photocopies of your drivers license. You provide the same to the clinic...and your lawyer. There is no doubt in my mind that the professionals involved in third party reproduction understand their clients' desire for confidentiality and generally make efforts to safeguard the privacy of the relevant parties. But mistakes do happen.

As an anonymous donor I was surprised, for example, when I requested copies of my medical records from the hospital where I did my first donation and the medical chart had the intended parents’ cell, home, and work numbers scribbled on it. During my second donation, my lawyer sent me an electronic version of my legal agreement whose file name contained the names of the intended parents. I would not be surprised if similar errors compromised my identity as well.

But even in the absence of such mistakes, your identity can easily be established. When filling out my donor profile for the agency’s database, I took care not to provide any identifying information. But what, exactly, constitutes identifying information in the age of Google and Facebook? Between the name of my school, the year I graduated, and my major, it would be easy to identify me through my school’s alumni directory. The fact that I mentioned participation in a particular varsity team makes it almost ludicrously easy to identify me.

I personally would not mind if my recipients or their off-spring attempted to identify me. Quite on the contrary, I've come around to think that I would like the offspring to have the opportunity to get in touch with me one day in the future if they wanted it. However, I know that a lot of donors are scared of the possibility of being identified. If you fall into this category, think twice about donating, and do not take promises of "anonymity" at face value.

As far as I am concerned, the most serious privacy implications concern health insurance. What if my health insurance finds out I donated my eggs and denies coverage twenty years down the road if I happen to develop, say, ovarian cancer? While your medical treatment will generally be paid in full by the intended parents and supplemental insurance is purchased to plan for unexpected medical complications, there is a good chance that, if you do develop complications, your health plan will find out. After all, most of these supplemental insurance plans require that claims first be submitted to the patient’s regular health plan. All of this only occurred to me three days after my last retrieval when I developed OHSS symptoms and my clinic told me I should go to the emergency room. I ended up not going to the emergency room.

The agencies, lawyers, mental health counselors, and clinics I have worked with all made efforts to inform me of the medical and psychological risks of donating my eggs. The fact that confidentiality can not really be assumed was not addressed by one of them.

Thoughts about Anonymous Donation

I meant to write more about my second cycle tonight but felt I had to get something else off my chest first. Last night I dreamed that my parents announced to me, as an adult, that I had been conceived with the help of a gamete donor (it wasn't clear whether the egg or sperm was donated). Then it turned out that there was no way to track down or identify my donor. Speechless, I sensed a wave of existential nausea rise in my body, along with the slow realization that I had been cheated out of something really essential. Then I woke up, surprised by the dream and the depth of the nauseated feeling, which eerily persisted even after I got up to take a shower.

I find myself wondering whether I still really want to cycle with intended parents who are not clearly in the "tell" camp. For a long time, I did not seriously consider doing an open cycle, or even a semi-anonymous one, but I have been thinking lately about whether it's right on the part of intended parents and donor (often via a legal agreement) to deprive donor-conceived offspring of the option to explore their genetic relations. The more I think about it, the more I wonder to what extent it is ethical for two parties to enter into a legal agreement that deprives a third party, who is not a party to the contract, of knowing their genetic history / ancestry. I would not want this done to me and my dream rather forcefully hit this home.

Anonymity used to be one of the most important things for me when I first started to think about donating my eggs, but I really sense my feelings shifting on the subject lately. I am curious to hear how other people feel about this subject.