Speaking of Donor Sibling Registry

Did anyone see the article in “O” the Oprah magazine this month? It was timely since we had just been discussing the use of the Donor Sibling Registry.

It was an article about a group of women who met using DSR, and how it changed their lives. To begin with, they had all used Donor X and of the 10 children born using his sperm over half were autistic. As the Donor X women started to connect with each other, they also started comparing struggles and concerns they were experiencing with their children. When they were able to get together and meet, they were surprised not only of the physical similarities between the children, but also their habits and behaviors.

One of the positive things that happened was that when the Donor X women with younger children talked with some of the others, they were encouraged to seek early evaluation by medical professionals. This in turn led to earlier diagnosis and treatment for their children.

Another positive outcome was that the women became great friends and support systems for each other. The referred to one another as “sister-moms.” Out of these friendships also came an extended family made up of many half-sister and brothers.

What also came of this story was the focus on sperm banks. Fortunately, the bank that housed Donor X’s sperm, notified him and pulled him from circulation . However, investigators found that although the DNA is tested for conditions like Tay-Sachs, cystic fibrosis and sickle-cell anemia, there is not much other regulation that takes place.

Most banks use the 25 rule. After 25 families use the donor, they are taken off the registry. However, if there is a medical condition that starts to show itself related to a particular donor, not much is done. This is for 2 reasons; one is that most sperm banks first and foremost protect the donor’s anonymity, so information would not likely be shared with other patients. In addition, because of the large number of folks using each donor, they lose track and don’t necessarily keep any documentation that would lead to a notification procedure for potential sperm bank users.

Because of this, the creators of the DSR have included a medical page that their users can fill out. This is one attempt at keeping track of live births and sharing any pertinent medical information with others who have used the same donor.

There are definitely at least two ways of thinking about this story. One group of folks feel that having a baby naturally is unpredictable, so to dismiss certain donors would not be appropriate. The other camp of people feel that you are paying big bucks to use the healthy sperm of a donor, and to not have this happen is a misrepresentation.

At a bare minimum, the story does make you stop and ponder a bit.

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By TTC veteran and mother of two, Elizabeth Andrews.