10 Things Your Doctor, Clinic, or Sperm Bank Won’t Tell You
1. Most donors* and recipients are not properly educated, counseled, or informed beforehand about the needs and rights of the children they are helping to create. This includes the importance of connecting with families to share and update medical information, and the innate desire of donor conceived people to know about their first-degree genetic relatives.
2. There is no comprehensive medical and genetic testing conducted by clinics and sperm banks. In the US the FDA only mandates for STD testing and for a handful of other diseases. Some facilities test some donors for some diseases. Testing for STD’s does nothing to prevent transmission of genetic illness. Proper genetic testing of all donors is critical. Hundreds of medical and genetic issues have been reported to the Donor Sibling Registry, many of them hereditary.
3. There is little to no regulation or oversight of the US reproductive medicine industry, which ships sperm to over 40 countries around the world (so this is a global issue). This industry is not required to maintain or update records regarding genetic disease transmitted to donor offspring. Information about inherited physiological and psychological predispositions are a significant element in obtaining appropriate medical care, particularly in preventative health care including screenings and preventative medicine. Examples: genetic predisposition for heart disease, mental illness, or Cystic Fibrosis. A donor’s medical profile is merely a self-reported family health history, along with a snap shot of one day in the life of a healthy young adult. 84% of surveyed sperm donors and 97% of surveyed egg donors were never contacted for medical updates.
4. No accurate record keeping exists about how many offspring are conceived for any one donor. Records, if any are kept, are incomplete regarding the number of offspring created from each donor, as all reporting is voluntary. There are many large cohorts of half-siblings, some now as large as 200. If urgent medical issues arise, families can not then be notified. Many families who are on file with the sperm banks claim that they were never notified about medical and genetic illness reported to sperm banks by donors and by families who used the same donor: they learn about the genetic and medical issues by connecting with other families on the DSR.
5. Around three quarters of surveyed donor offspring advise that prospective parents do not use “anonymous” donors. Many countries have banned anonymous donation and we all need to ask the question “what is in the best interests of the child to be born?” “Anonymity” is never the answer. Many heartfelt stories and testimonials by donor offspring have been reported to the DSR. Many parents use donor conception instead of adoption because a genetic connection is important to them, but then negate the importance of that very same genetic connection when it involves their child’s relationship to the “donor”, the other half of their child’s genetic family, ancestry and medical history.
6. Many donor conceived children long to connect with their half siblings and their donors long before they are 18. 18 is an arbitrary number set by clinics and sperm banks to protect their own financial liability. This age limit is not backed up by any psychological research. Quite to the contrary, research has shown that many wish to connect, and have made successful connections, long before the age of 18. Thousands have been doing so on the Donor Sibling Registry for more than 16 years.Many egg clinics (not one sperm bank) have been connecting donors and parents on the DSR (anonymously) from pregnancy or birth for years. This allows parents and donors to share and update medical information right from the start, and it allows children to have access to their biological parents from the moment they start asking questions.
7. DNA: Donors Not Anonymous. Anonymity is a thing of the past and shouldn’t be promised to any donor or to any prospective parent. Sperm banks and egg clinics need to stop the fallacy of selling “anonymous” donors. Donor conceived people have been locating their biological parents via DNA testing (along with Google and social media) since 2005, as reported in New Scientist Magazine, so this is not news. Donors do not need to test their own DNA in order to be easily found by offspring and/or their parents, and there is no law prohibiting contact. Donors must be willing to be known by any offspring they help to create – and long before offspring turn 18.
8. Because of this end to guaranteed anonymity, non–disclosure is no longer an option. Many people who swabbed their cheeks to learn more about their ancestry and family tree have been shocked to find out that they are not genetically related to one of their parents, because their parents used a donor, and kept it a secret. Many have also been shocked to connect with half siblings. Finding out in this way that your parents have not been honest can wreak havoc on a donor offspring’s sense of trust and stability in the family. If you are a parent who has yet to tell your donor conceived child that they were created with the help of a donor, now would be the time to have that conversation, and we can help with that. It’s never too late to tell.
Family secrets can be toxic, and your donor conceived child has a right to know about the methodology of their conception, about their medical background, and about their ancestry. If parents have not told, there is usually some grief associated with infertility that is unresolved, or there is an unfounded fear about a non-bio parent’s relationship with the child being negatively affected by the truth coming out.
Parents: This shouldn’t be about your unresolved grief, your hesitations, or your fears. This should be about what’s in the best interests of your child, and their right to the truth about themselves, their medical background, their ancestry, and their genetic relatives. After telling (or after your children find out via DNA testing), please do not ask your children to keep the “secret”. This may have been your secret, but it shouldn’t be theirs. This type of response could cause unnecessary resentment, anger, and upset. Secrecy implies shame, and donor offspring have nothing to be ashamed of, most certainly not the methodology of their conception. Get yourself some counseling to help work through your unresolved grief, fear, or shame so that you don’t pass it along to your children. You are, and always will be your child’s mom or dad. You can work on becoming a more confident parent, secure in the knowledge that your child knowing the truth won’t rattle the strong parental foundation that you have built.
9. Telling is just the beginning. Many parents think that just because they have told their child about his/her origins, that this will be enough. Many then minimize the importance of the “donor”, thinking that because they don’t feel DNA is important, then their child shouldn’t either. Parents need to know that their child may view this invisible one half of their DNA to be a very important part of their identity and they may feel an urgency about gathering information and also connecting with their previously unknown genetic relatives. DNA isn’t the only way to make a family, but the importance of familial DNA connections can’t be denied. Honor your child’s curiosity, and let them know that they have your full support as they venture out for more information. Don’t behave in a way that forces your child to search for answers behind your back, as that can only create more resentment. They need you to be on their team.
10. The choices you make early on about creating your family with a donor will affect your donor conceived child for many decades to come. Try to think beyond your own needs, and educate yourself about what we now know to be true for donor conceived people.
The Donor Sibling Registry (DSR) is a US based, global registry with a mission of connecting, educating, and supporting all those in the “donor family”. The 501(c)3 non-profit organization facilitates mutual consent contact among donors, recipients and offspring, so that they can share important medical information, and explore new relationships. Since it’s inception in 2000, the DSR has helped to connect almost 14,000 of its 52,500 members with their first-degree genetic relatives.
* No one is “donating” anything, as all eggs and sperm are sold.