Friday, September 11, 2009

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.

6 comments:

  1. A 61-year-old woman gave birth to her own grandchild using an egg donated by her daughter, a clinic in Japan has said.
    The surrogate mother is believed to be oldest woman to have given birth in Japan. http://infertilityuk.wordpress.com/2009/09/23/egg-donation/

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  2. What side affects do you have from being a donor?

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  3. Dear Golden Goose,

    As a former egg donor myself (which is why I am posting anonymously), I too have made the difficult choice to NOT go to the ER with OHSS.

    Since you have already had OHSS once, you may get it again. I suggest the following: 1) Buy a digital scale. This will help you to know EXACTLY when the worst has passed, since when you begin to lose weight (even if only a few ounces), you are on the road to recovery.

    2) Gatorade and protein bars. But you knew that. Right? Not until my fifth donation did they tell me how important the protein bars were.

    3) If you are on an antagonist cycle, as I was, ask your doctor for some more Ganirelix/Antagon to help bring your E2 levels down post-retrieval. Helped me immensely. Possibly Lupron could be used in this way if you are on a Lupron cycle? I don't know.

    4) This is going to sound weird, but consider buying an enema to have in your medicine cabinet. I gave myself one once the night after retrieval, and it helped with the fertility med-induced constipation and bloating SO MUCH. Beats getting poked with needles in the ER anyway, and you've had enough of that!

    Wishing you good luck!

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  4. Thanks for sharing such intresting post.......Egg donation offers a chance of pregnancy to women who are unable to get pregent
    Egg Donor

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  5. Thank you for this post! I had a miscarriage 7 years ago. I still can’t hold back my tears when I remember that horrible period of my life. After my loss I couldn’t get back to life for a long time. I’m glad I have my husband. He gave me support I needed the most. Together we can do everything! We wanted to have kids for a really long time. We’ve gone through a lot, but believe me, if you want something badly, you’ll get it! Don't let anyone to destroy your goals! Some people simply don't understand our problem. It's our life and our decisions. We are the only one, who can make our future better. We were looking for clinic with lower prices and at the same time good service. We used Ukrainian clinic and paid €6 900. We had 2 attempts in general. We asked our doctor to find egg donor, who will have same features as I have. I consider my girls as my own. I’m their mother, I carried them and gave them birth. I don’t even think about the procedure or donor. We were met in the airport by taxi driver, who was carrying us across Kiev by his car. He was transporting us to the clinic and our apartment, which was also provided by the clinic. We had a manager and she translated everything for us. She spoke language fluently, so there were no misunderstandings. They even provided us with food supply! All these services were already included in our package. We didn't pay some extra fees not a single time. The only thing which we cared about was de ivf procedure. Our doctor knows her job very well! We have no complains. Thanks to her professionalism I have my precious daughters.

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  6. After four years of trying to conceive, I received a diagnosis of premature ovarian failure. My husband and I began researching our options. We decided that Egg Donation would offer the most successful opportunity to conceive a healthy child. We spoke with several different clinics in Canada and the USA. There seemed to be a lot of difficulty around finding donors, and was extremely expensive. That is when I started to look at clinics abroad. We had always planned on visiting Europe at some point. We ended up at BioTexCom for several reasons, some of which were up to date technologies, embryo monitoring, recommendations from former patients, reasonable pricing, and success rates. The communication with the clinic was fantastic and professional. All of my questions were answered promptly by our coordinator. I am delighted to say that I am currently 21 weeks pregnant! My pregnancy has been very healthy so far. This entire experience has been a fantastic adventure. I would absolutely recommend this clinic.

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