Lack of Complete Medical Information Leaves Donor Conceived People with the Unknown

January 27, 2022
By Tiffany D. Gardner

You go to the doctor and are handed a clipboard full of papers with questions you are sure you have answered a thousand times. For most people, filling out family medical history is an annoyance. For donor conceived people, responding to these questions can be fraught with emotions. Why? Because the answers are often unknown.

Many late-discovery donor conceived people were given false or incomplete medical information from our parents and have been reporting these half-truths to healthcare providers since young adulthood. We memorized our family members’ health diagnoses and age of onset, and diligently reported the information to our doctors. Then one day we learned the ultimate piece of our medical history—that tiny detail the fertility doctors said we did not need to know. We learned we were donor conceived.

So what happens now? How does a donor conceived person answer questions that used to be routine? 

If a donor conceived person hits the jackpot, they identify the donor through a DNA test and are provided with the missing details of their true medical history—the diseases that were never on their radar, why they appeared to be the only family member with a rare disorder, and potentially life-saving information they were never supposed to have. And if a donor conceived person is even luckier, they make a lasting connection with their newly found genetic parent and are able to get annual (or more frequent) medical updates. 

But maybe the donor is identified and never responds. Or maybe the donor provides some details but then tells their genetic child to never contact them again. Maybe the donor is deceased, or decades of anonymity have successfully buried the answer to the question of “Who?” That donor conceived person will be missing half of their own family medical history, and their children might never know a quarter of their own.

The above scenarios are equally possible for donor conceived people who always knew the truth of their conception if they were created using gametes from an anonymous donor. That’s because while clinics today provide more medical information to gamete recipients than was available in the past, donors are not required to give annual updates, nor are clinics required to actually verify that the information provided by donors is truthful or correct. 

For donor conceived people, a lack of complete, truthful, and updated family medical history can be the difference between life or death.

The consequences of the lack of regulation in this area have received recent media attention because of tragic stories like that of Steven Gunner, as recently reported in The Wall Street Journal. In the wake of their son’s death, Laura and David Gunner are championing New York state legislation that would require clinic verification of, among other things, health information provided by gamete donors. And although the American Society for Reproductive Medicine (ASRM) easily dismissed this type of proposed legislation, in the words of Benjamin Franklin, “An ounce of prevention is worth a pound of cure.”

For donor conceived people, a lack of complete, truthful, and updated family medical history can be the difference between life or death. No person created through such a painstakingly planned medical process and procedure should be left without information that could potentially save their life. If knowing one’s accurate family medical history is so unimportant, as we can perhaps take ASRM’s nonchalant response to this topic to suggest, why must we provide this information every time we set foot in a doctor’s office? Moreover, why does ASRM itself include detailed questions regarding family medical history on patient intake forms?

The answer to that question, at least, is not unknown.

Top photo by Chris Yang via Unsplash