By admin on March 14, 2017


Three half-sisters meet


Family can be formed and defined in so many different ways, but biology has always been the most common family bond. If biology didn’t matter, we’d give birth to our babies, and then just pick any baby from the hospital nursery to take home. That doesn’t happen! In most cases, parents want to take home and raise the child that they have a genetic connection with.

Having a biological connection to a child (to one parent) matters to parents who use sperm and egg donors.* So, if parents value this genetic connection on one side of our child’s family tree, shouldn’t they also recognize and value its importance on the other side? All too often I hear parents negate or minimize the importance of their child connecting with their unknown biological parent (the donor) and their half-siblings (people conceived from the same donor). Some refer to the donor’s contribution as merely “a piece of genetic material” or just a “donated cell.” But to many donor-conceived people, it’s so much more.

Donor offspring desire to know about their genetic relatives.
Genetic uncertainty has clouded my life since I was 12 years old, when I learned that my conception was facilitated by an anonymous sperm donor. Though the shock dissolved in the following months, I’m reminded of this obscurity entwined in my DNA when I’m asked to fill out a medical history form at the doctor’s office and have to indicate that, genetically speaking, half of my family tree remains in shadow. I’m joining the Donor Sibling Registry in the hope of connecting with others who have had similar experiences, hearing stories, and maybe even finding a biological half-sibling or relative.

Even children of donors can be curious about their half-siblings.

We often talk about the importance of honesty in donor families and honoring a child’s curiosity about their first-degree genetic relatives. Do donors also owe their own children the truth about their donating? Do the donor’s children have a right to know that they (may) have half-siblings? DNA testing is already revealing these family connections, and it will only continue to become more common. My guess is that most donors do not inform their families, because some are ashamed, some don’t consider donor children as true “family,” some are afraid of 100 kids coming forward, and some have spouses very much against it. I should note that we do have a few thousand donors on the DSR who are open to contact (with some wonderful resulting stories), and we do hear about positive donor/offspring connections also made through DNA.
I recently found out that my father donated to sperm banks many times years ago and I wondered if I have any more siblings out there.

Why not give children the opportunity to grow up knowing their half-siblings?
Our kids are two and half years old. They are only 3 weeks apart in age. They are so alike and they are so different. They spent 4 days together, fighting and playing and then fighting some more. Within our individual families they were only children. In our new family they are very much sister and brother. There aren’t words to explain the sense of peace that has given us as parents. There’s no yardstick that can measure how much this has enriched our lives.

Some parents who have seen their children’s half-siblings posted on the Donor Sibling Registry (DSR) have said that they will wait to establish contact with the half-siblings until their child is old enough to make that specific request. Generally, children don’t decide when to meet their relatives. (They also don’t decide the timing of a lot of things!) We don’t wait until they show interest or ask to meet Aunt Shirley, Cousin Frank, or Grandpa Larry to make the introduction. Our children grow up knowing their relatives, and then, when they are older, they choose who they wish to be in contact with.
Just imagine being 20 something and finding siblings on your own when DNA testing is even more wildly popular, or they find you. You then develop some kind of relationship. You find that many of these siblings had parents who encouraged these relationships, even from babyhood. You see the pictures, you hear the stories. Disney, camping, birthdays.... A couple of them will be roomies in college, maid of honor in a sibling wedding, etc. To me, this would be crushing. I would feel so cheated. Whether or not I had great neighbor pals, awesome cousins, or even siblings from the same home.

We chose early contact with half siblings because we felt if he wanted to end contact when he was old enough to choose, he could. But if we waited until he was older, and told him we knew his half siblings all along, and he wished for that contact, there would be a lot of years and missed opportunities gone. We feel being open, honest, and having connected early on may instill a sense of pride and ward off any shame that may come about if we were secretive about this part of his story and family. We also have a son who was adopted at birth so we are big on celebrating and embracing the ways in which our family came to be.

Connecting on the DSR may be the only way to share/update important medical information with other families.

For most, connecting with half-siblings on the DSR has been an overwhelmingly positive experience:
I just found my half-sibling this year. I am 29 years old and wish that I could have known him my whole life. It is really special, and I’m so thankful to have found him. We met a couple of months ago and it’s like we have known each other all along.

I think it’s really cool that I have siblings (Im close to three sisters and one brother). We get closer every year because we FaceTime, text, and get together in the summertime; ever since I was three. My sisters and I are now teaming up against our brother. And it’s fun picking on him. We live thousands of miles apart, yet it feels like we all live together. We’re talking about going to college in the same town.

Twins (on either end) meet half-siblings for the first time





You’re never too old to find half-siblings.
When I signed up with the DSR a year ago, I did it more with the hopes of finding information about my donor, than with any thoughts of actually finding a sibling. After all, I’d been conceived in the late sixties, well before the existence of sperm banks with registered donors. At that time everything was very secretive, with absolutely no information given to the parents. When I got to the DSR, I was the first person to create a listing under my mom’s doctor’s name, from New York City. About eight months later, a woman emailed me to say that her mother had used the same doctor as mine, just two years later. We figured we could band together to find out as much info as we could about how the doctor (now long deceased) had gone about finding donors. After a few months of research, we were able to piece together that the pool of donors he used was actually very small. It honestly hadn’t occurred to us before that we could be siblings, but once we learned about the small donor pool, we figured why not give it a shot. So we found the most reliable and thorough testing facility, and did a half-sibling DNA test. Lo and behold, it came back with 99.7% certainty that we were sisters! So for all the older donor offspring out there who have only fragments of the story of their conception, don’t give up hope.

And finally, of course, there are no guarantees that all family connections will be entirely positive.

Some people are suspicious when they look at the success stories on the DSR, and have asked, “How can these connections all be so positive?” While the great majority of new family connections on the DSR are indeed very positive, some might be more flat or sometimes even more of a struggle. Our families are made up from all races, religions/non-believers, academic backgrounds, gender identities, sexual orientations, abilities, socio-economic backgrounds, political perspectives, nationalities, and varied personality types.

All families have issues. Not all people are like-minded, or have enough in common to wish for a continued relationship, and sometimes people don’t agree on the desired level or degree of contact. When we look around our Thanksgiving table, do we want to hang out with everyone there? Sometimes not! Some family members are just not the kind of people you’d want to hang out with, and some may just be people with whom we don’t have enough in common. Are these reasons to not seek out your (or your child’s) unknown genetic relatives? We think not!

* People who sell their sperm and eggs are commonly known as “donors,” although most don’t actually donate anything.

By admin on January 12, 2017
We filed a “Citizen’s Petition” to the FDA, and it’s now available for people to add comments. Please, add your comments; the more we get, the better our chances of accomplishing something (anything ... even a further conversation with the FDA would be considered a success). https://www.regulations.gov/docket?D=FDA-2017-P-0052

From my FDA contact:

Good Morning Wendy,

I’ve attached your acknowledgement receipt for the petition. Its docket number is officially FDA-2017-P-0052.

You may view or comment on the petition through www.regulations.gov. Here is the link to your petition: https://www.regulations.gov/searchResults…

I have sent the petition to the FDA’s Center for Biologics Evaluation and Research (CBER). Per regulation the center has 180 days to respond to you about this petition. That response may be a decision or an interim response. We won’t likely receive an update before that time unless the center has questions for you. In that case, they will contact you directly.

A few examples of initial public comments:

“Our cryobank has been unable or unwilling to locate our 'identity release' donor for 6 months now, despite all requirements/paperwork being in order, and does not return phone calls or emails regarding the status of our request to contact the donor. However, with DNA testing we were able to locate the donor ourselves, only to learn that some of the original information we were provided by the cryobank was incorrect, including identity release status, ethnicity/religion, college information, SAT scores, and certain health information. This industry needs to be regulated so that donor information is factually correct and that the cryobanks are being forthright and honest in their dealings with clients.”

“The United States is one of the only developed countries on earth that is lacking crucial regulation and oversight of the artificial reproduction industry. There is ample research supporting the negative effects that this lack of regulation continues to cause. The FDA has a responsibility to put common sense regulations in place to ensure the safe and ethical creation of human lives by donor conception.”

“I strongly support additional review of the donor gamete industry. I believe the FDA should engage in further investigation of the business of egg, sperm, and embryo donation as a basis for developing further regulation and oversight. As an academic who has studied and written articles and books about the fertility industry, I strongly urge you to undertake additional review. Thank you.​”

​“I reported to the sperm bank that my child was diagnosed with cancer (lymphoma/leukemia) the same week of his diagnosis and provided proof, so they could report it back to the donor and to the other families who had used the same donor. Almost two years later, none of the 11 families I am in contact with have been notified about my son’s condition.”

And I also submitted a comment:

Recent input from families who used California Cryobank (from the DSR’s Facebook page, January 2017). This information illustrates the dishonest manner in which sperm banks (California Cryobank is not unique in this respect) disseminate information about limits on numbers of offspring for any one sperm donor:

“They told me in 2011 it was limited to 20 family units but they are now saying it has increased to between 25 and 30 family units.”
 “In 2011 CCB also told me that they limit families of open ID donors to 20 and anonymous donors to 25.”
 “Back in 2004 I was told that each donor had 10 vials and that was it.”
 “When I used CCB in 1999 they told me limited to 30 families — as of right now there are 30 kids.”
 “In about 1990 they told me ten. I guess it just depends on who answers the phone!”
 “In 1991 they said 1 or 2 births was the limit.”
 “In 2005 we were told the limit per donor was ten families.”
 “In 2010, when we chose our CCB donor, we were told 10 families max.”

Note: When a prospective donor called CCB last summer and asked this question: “What is the maximum number of children that you allow per donor?” California Cryobank told the prospective donor, “12 to 15 family units.”


By admin on December 06, 2016

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 U.S., the FDA only mandates testing for STDs and a handful of other diseases. Some facilities test some donors for some diseases. Testing for STDs 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 U.S. 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 diseases transmitted to donor offspring. Information about inherited physiological and psychological predispositions is a significant element in obtaining appropriate medical care, particularly in preventative healthcare 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 snapshot 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, many over 100, and even over 200. If urgent medical issues arise, families cannot 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 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. Age 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 20 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, whether for 18 years, or forever. 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 a new phenomenon. 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, nondisclosure 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 their origins, 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 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 U.S.-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 its inception in 2000, the DSR has helped to connect more than 20,000 of its 71,800 members with their first- and second-degree genetic relatives.

* No one is “donating” anything — all eggs and sperm are sold.