Who’s my daddy? The issues of sperm donation

June 10, 2010Carole 3 Comments »

Considering the history of sperm donation in the US, it’s no surprise that we are still struggling with issues surrounding sperm donor secrecy. The first documented case of sperm donation was described in a letter written by Addison Davis Hard,  a medical student in 1884 at Jefferson Medical College in Philadelphia who describes probably the first US donor insemination performed by his teacher, Dr. William Pancoast.  A couple came to him because the young Quaker wife of a local merchant couldn’t get pregnant by her considerably older husband. The good doctor examined her and could find no reason for their infertility. Finally, it occurred to him to examine the husband and discovered that he had no sperm. So the physician discussed the case with his medical students and one of the students suggested that the “best looking” student should provide a semen sample to inseminate the wife. This seemed like a good idea to the doctor and his students so they anesthetized the wife and performed the insemination. Interestingly enough, no one thought to inform the couple of this plan, let alone ask their permission. Informed consent had apparently not yet been invented. When the wife became pregnant, the physician let the husband in on their little experiment and (luckily for the good doctor) he was pleased. The wife was never informed of the donor insemination as per the husband’s request.

Fast forward 126 years later and there are approximately 4000-5000 births a year from donor insemination in the US, according to Xytex Cryo, one of the larger sperm banks.  The sperm bank industry is booming with 15 sperm banks in the US and at least 1500 sperm donors. That’s more than five times the number of donors available in Great Britain which is facing a sperm donor shortage. The number of sperm donors in Great Britain dropped to 307 donors after reversing confidentiality laws in 2005 that allowed donor offspring to find out the identity of sperm donors. Dutch sperm banks also reported a shortage of donors after a similar law was adopted in 2004. In spite of the risk of sperm donor shortages, the days of being able to donate sperm anonymously may be on their way out because donor conceived children are pushing back on the assumption that donor anonymity is sacrosanct.

Although the American Society for Reproductive Medicine recommends that sperm donors be retired when they have created 25 births/donor per 800,000 population or 1 donor birth per 32,000, there is no US regulation to limit donor usage and no penalty for not following voluntary guidelines. At our clinic, the sperm vials always came with a feedback form to let the sperm bank know if the donor produced a pregnancy or not. Filling out the form was hit and miss and to my knowledge, the sperm  bank never followed up with the clinic to determine if the patient became pregnant. So I expect that the data used to retire sperm donors is flawed and the number of births attributed to each donor are probably under reported.

Most of the problems that arise from anonymous donor insemination are all related to information sharing. Children conceived from donor sperm typically don’t get a rigorous donor medical history because even if a medical history is obtained from the donor, it is all self-reported and not validated or confirmed. Even donors who want to fully disclose all their medical history may not be fully aware of their families health history or the donor may not be diagnosed with some genetic diseases until later in life.

In October 2009, the Journal of the American Medical Association reported a case of a 42 year old sperm donor who donated sperm in his twenties, then discovered 15 years later that he had a cardiac gene mutation which put him and his offspring at risk of sudden cardiac death.  His sperm created 24 children, 22 children in 13 families through donation and two children with his wife.  Nine of his children have inherited the faulty gene causing hypertrophic cardiomyopathy. Two of his children, now teenagers, have symptoms of the disease. One child conceived from his sperm died at age two. The authors of this JAMA article called for increased oversight by the FDA of sperm donors to include not just infectious diseases but also genetic diseases. The San Francisco sperm bank who distributed the sperm has changed it’s policies to require a 12-lead electrocardiogram cardiac test to try to identify and rule out future potential donors with hypertrophic cardiomyopathy.

It sounds like a simple request to require genetic testing to avoid tragic outcomes like this one but genetic testing raises a multitude of questions. What genetic tests do we test for? Many sperm banks voluntarily  test for some diseases such as cystic fibrosis, thalassemia anemia, sickle cell trait, Tay-Sachs, and other genetic diseases that have increased frequency in Ashkenazi Jews,  but all of these are less common in the general population then the hypertrophic cardiomyopathy genetic mutation which was passed on in the JAMA case.

The second problem is that we don’t even have tests for every genetic defect possible- even if we knew all the potential human genetic diseases. In fact, every single one of us on average have between 12-62 “copy  variations” or genetic anomalies in our genome. Not all of these genetic variations cause disease. Even the ones that do code for genetic disease often depend on a combination of genetic and environmental factors to express the disease.

So finding the “perfect sperm donor” is an impossible goal-just like finding the perfect mate. Most of us don’t subject a potential mate to a battery of genetic tests so we all roll the genetic dice to some extent when we have children. Even if we could test for everything, should we? I can already hear the slippery slope argument leading to eugenics and a dystopian society where genetic “perfection” is valued above everything else.

So if we can’t find a perfect donor to avoid the possibility of genetic disease in our offspring, what can we do? It seems to me that the best solution is to try to find a sperm bank that has policies and procedures in place to be able to open communication between the donor and the donor offspring if anyone involved in the process needed to share medical (or personal) information in the future.

Wendy Kramer, and her son Ryan who was conceived through donor insemination have created a website called the Donor Sibling Registry which helps donor conceived children find their siblings and in some cases, children can find their donor if the donor is also agreeable to making contact. The idea behind the web site is that anyone (donor or donor-conceived child)  who is interested in connecting can register on their site and find their match based on the anonymous donor number that they have in common. The donor number is part of the medical record of the patient who used the donor sperm. Sometimes clinics are reluctant to provide this information so the Sibling Donor Registry has template letters (that can be printed on your attorney’s letterhead) to try to extract this information from the clinic. Unfortunately, even the strictest federal record retention laws for medical records allow donor records to be discarded after 10 years which is obviously not enough if we want adult children to have a chance to find the donor numbers in those medical records. It is probably a good idea to copy and retain those records before you leave the care of the clinic.

The beauty of the Donor Sibling Registry site is that the pace and level of shared information is based on the individual’s ability to live with the information. Donors and  donor-conceived children can log on anonymously and look to see if anyone out there shares their donor number. If both donor and donor conceived child are registered and they want to initiate contact, they can take next steps at a pace comfortable for them. The same applies to donor siblings who share the same number. Medical information can be shared through this gateway without requiring full disclosure and actual contact.

The FAQs on the SDR website offer advice on how to go about making contact. The other useful tool they have on their FAQs page is a section on trying to decide which sperm bank to use. They have compiled comments describing both negative and positive experiences their members have had with each of the sperm banks listed. In addition, Wendy Kramer will privately email you with recommendations about the most donor-conceived child  friendly sperm banks if you email her at wendy.kramer@yahoo.com.

Sperm donation is a wonderful option for many adults who want to have children and can’t do it the old fashioned way for either medical or social reasons. All parents need to anticipate their children’s needs but parents of donor-conceived children have an extra burden because they need to anticipate that their children might need or want to find their biological roots at some point decades into the future.  Finding a good sperm bank that makes that communication process easier and has donors that are willing to allow offspring to contact them in the future is good insurance against trouble later.

© 2010, Carole. All rights reserved.

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