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94,150 members
26,575 sibling & donor connections!
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July 2024: Record Numbers | |
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The Donor Sibling Registry matched 302 people in July.
That's the most people matched in a month since our second Oprah appearance in 2008. Thanks to a Netflix documentary.
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Is it ethical?
Sperm banks/clinics are changing originating donor numbers.
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When posting on the Donor Sibling Registry to connect with your own or your child's genetic relatives, it is important to post under the originating sperm bank/facility (where the donation occurred), as the large US (and Danish) sperm banks ship to hundreds of small clinics worldwide.
Recent reports have shown that some local facilities, including the London Sperm Bank in the UK and City Fertility Center in Australia, are reselling sperm from larger sperm banks (e.g., Seattle Sperm Bank and Fairfax), assigning completely different donor numbers in an attempt to obfuscate donor origins.
If you used a local clinic, please make sure that they did not buy the sperm from a large US (or Danish) sperm bank and then change the donor ID/number. Facilities that buy sperm from large sperm banks should share all original sperm banks and donor numbers. Covering up the origin of the sperm and the unidentifiable donor ID keeps people from connecting with half-siblings and donors and, therefore, also prohibits the sharing of important medical information with each other. Since the sperm banks have inaccurate records regarding the children born from any one donor, in most cases, the best way to connect, update, and share information directly with the families is through the Donor Sibling Registry.
Representatives from the London Sperm Bank pointed me to HFEA 2010 guidelines as to why they have deliberately hidden the non-identifying origins of their imported sperm and why they won't contact those families (who have no idea that their donors were not from the London Sperm Bank) to notify them of the correct sperm bank/donor ID. They put the onus on the families to ask, but you can't ask about what you don't know to ask about. It's simply lying by omission.
One argument that the London Sperm Bank folks made in defense of this practice was that "a study" showed that donor-conceived people do not wish to know their close genetic relatives. That's just not an accurate or logical argument. They also said they won't educate their parents and donors about the Donor Sibling Registry, again citing HFEA rules. I found nothing in the HFEA guidelines that backs up that claim.
The HFEA argues that donor numbers are identifiable information. "...donor codes have the potential to identify individual donors, and the sole purpose of disclosing donor codes to parents of donor conceived children would be to identify donor conceived siblings. As such, the release of donor codes would not fall within any of the relevant exceptions which permit disclosure of register information. The Authority has therefore determined that it will stop the disclosure of donor codes on a permanent basis, and strongly advises all centres licensed by it to take immediate steps to ensure that they have systems in place to prevent the unlawful disclosure of donor codes either directly on request, or indirectly. This would include measures such as the redacting of patient records where required, and making any necessary modifications to witnessing arrangements." That's a lot of effort to try and keep donors, donor-conceived people, and their families from making their own mutual consent contact at any time on the DSR.
Two weeks ago, I wrote to the HFEA's Chief Executive, the Director of Compliance and Information, and another contact who is an HFEA Authority member to ask them about the 14-year-old guidelines. No one replied. The UK, which some consider progressive in how it deals with donor conception, seems unwilling to adequately counsel and educate parents and donors on the importance of a child connecting early in life (long before 16 or 18) with their siblings and, yes, even with their biological parents. There are many published research studies and 24 years of DSR stats, stories, and anecdotal information from almost 100,000 people that provide this evidence.
The HFEA is, in effect, enforcing out-of-date guidelines that try to keep donor-conceived people from their close genetic relatives, by mandating the deliberate changing of donor numbers and by not allowing sperm banks to contact all affected families to notify them of the correct originating facility and donor number. Since 2005, donor anonymity has been an illusion anyway. They need to start riding the horse in the direction it's going.
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Medscape September 16, 2024
One in five children (20.2%) who have an older sibling with autism spectrum disorder (ASD) are likely to be diagnosed with the disorder as well, according to a study published in Pediatrics.
When a baby had more than one older sibling with autism, the family recurrence rate rose to 36.9%, the study found.
The researchers, led by Sally Ozonoff, PhD, Department of Psychiatry and Behavioral Sciences at University of California Davis Health in Sacramento, analyzed data from 1605 infants who had an older sibling with ASD using data from the global Baby Siblings Research Consortium.
They calculated that the rate of autism recurrence is seven times higher in families who already have one autistic child than in the general population, which points to the importance of close developmental observance in infants born in families with autistic children, particularly male infants in those families. This study replicated a 2011 study, also led by Dr Ozonoff, which found a similar rate of familial recurrence.
Differences by Sex and Race
Dr Ozonoff's team found that sex and race played a part in likelihood of recurrence. Younger siblings of females with ASD were much more likely to develop the disorder (34.7%) than siblings of boys (22.5%). And male younger siblings were more likely to have ASD than girls (25.3% vs 13.1%).
Additionally, ASD recurrence in White families was 17.8%, while across other races collectively the recurrence rate was 25%.
Links With Maternal Education
Differences by maternal education were also striking. Recurrence was 32.6% when mothers had a high school or less education; 25.5% with some college; 19.7 with a college degree; and 16.9% with a graduate degree. The parental education revealed a significant effect only for mothers (P < .01); paternal education was not significant (P = .09).
Suzanne Rybczynski, MD, chief medical officer at East Tennessee Children's Hospital in Knoxville, who was not part of the study, praised the study for following babies over time, "doing serial evaluation using two very standard tools in diagnosing autism and developmental delay."
The babies were evaluated as early as 6 months of age, for up to seven visits. A final assessment was made at 36 months.
Dr Rybczynski said it was interesting to see that, although ASD prevalence has increased substantially from the 2011 study (0.9%-2.8%), the findings regarding the sibling link have been consistent (18.7% in the 2011 study to 20.2% now).
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Consult/Advice/Support Video Chat |  | |
Here are some issues we can chat about:
- I just found out that I am donor-conceived ... help!
- Donor-conceived people who are shouldering the secret of donor conception (not letting parents know that they know) after finding out later in life.
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Prospective parents: what you should know to make informed and educated decisions that will affect your child for decades.
- My adult donor-conceived child just found via DNA testing that they are donor-conceived ... how do I best support them?
- Maneuvering through disclosure, a child’s right to know, and when and how to tell.
- How to move forward in connecting with a half-sibling’s family (or many families).
- Connecting with a formerly anonymous donor, via the DSR, DNA, or other methods.
- Coping with donor family members who have different comfort levels and desires to connect.
- Non-biological parents who feel uncomfortable with their children reaching out to donor relatives.
- Parents: discuss the distinctions about how you define family and how your child might do so.
- Helping to maneuver the fine line between privacy and secrecy in the families we connect with.
- Donor-conceived people: how to cope when you have a burning desire to know your genetic/ancestral history.
- Donors: how to move forward with connecting when your family members may not know of your donations or may not approve of your reaching out to your genetic offspring. How to manage when there are many of them.
- Parents/donors/offspring: coming together from different socio-economic/cultural/political/sexual orientation/religious backgrounds who need assistance in moving forward in the most healthy way possible.
Feedback:
Thank you, Wendy, for talking to us this afternoon. It’s always so soothing and comforting to share our feelings and thoughts with you. Thanks for listening to our concerns and fears. We’ve never been able to open up like that with anyone for the past 37 years. We told our kids about you and how helpful you were to us and that you would be available to talk to them if they so desired.
— L&T*
Thank you so much for sharing your exhaustive experience with me. You gave great advice and gave me a lot to think about. I really appreciate it! I will keep you posted as I move forward.— LR
Thank you so much for being there and spending the time to talk with us yesterday. I feel like we're getting the ball rolling at least. I can't express my gratitude enough for your expertise, knowledge, and availability. I will be in touch again without a doubt. — M&L
It was nice to speak frankly and to air our fears (even the ones we knew were irrational) to someone who knows how primal this new donor communication is. — RM
Thank you so much for your guidance and support! It really helped prepare me for the conversation with my mom, dad, and brother. I also had the opportunity to Facetime with 4 half-siblings yesterday, thanks to the DSR. 3 of them happened to be together for a reunion of sorts, and we looped a fourth one in. I was able to connect a fifth to this group via text afterward. It was incredible! Thanks, again!
— SC
*These parents were recently advised by their licensed mental health professional to not tell their adult children the truth, seeing "no reason to do so". Unfortunately, this is not uncommon.
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Broadview Magazine Article
by Alison Motluk
Sperm donors are anonymous in Canada. Adult children are finding their roots anyway.
Canada has been slow to end anonymous paternity, but cheap and easy genetic testing makes staying unknown all but impossible.
The first time a person ever tracked down an anonymous sperm donor this way was in 2005, and it was a 15-year-old boy from Colorado named Ryan Kramer. Five years earlier, he and his mother, Wendy, had launched the Donor Sibling Registry, an online platform where donor-conceived people could connect with half-siblings or donors through the donor identification numbers that clinics sometimes assign. But Ryan wanted to find out more about his sperm donor’s country of origin, so he kicked things up a notch.
He spit into a tube and sent it to a company called FamilyTreeDNA. Genetic testing was not as refined back then, but because Ryan was male and had a Y chromosome, and because Y chromosomes are passed down relatively unchanged from father to son over many generations, much like surnames, Ryan’s Y chromosome was able to connect him with a surname. And that surname, after some sleuthing, led him to his biological father.
I was the reporter who broke that story, and I still remember the dawning realization in many of the people I interviewed, including geneticists and fertility doctors, that the age of anonymity had come to an end. Today, with more sophisticated genetic testing and millions more people voluntarily handing over their DNA, finding genetic relatives is even easier. I used to write about people searching for their donors, but now it’s mostly stories of people finding them.
Photo: Ryan Kramer, who co-founded the Donor Sibling Registry with his mother, poses for a photo outside his office in 2018.
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DSR Website Project
50% complete!
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Our UX/UI website improvement project is approximately 50% complete and on target to be implemented by the new year.
UI (user interface) and UX (user experience) design are two different areas of digital design that can work together to create a strong user experience:
- UI design focuses on the look and feel of a product's visual components and interactive elements, such as screens, buttons, icons, and toggles. UI designers create intuitive, aesthetically pleasing interfaces that drive user engagement.
- UX design focuses on the overall user experience with a product or service, including how they feel about it. UX designers identify and solve user problems by creating wireframes and testable prototypes that map out the user journey. UX design is usually the first step in the product development process, followed by UI design.
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NBC News Story
Netflix's 'Man With 1000 Kids' puts a spotlight on the lack of international regulations for sperm donors.
I asked the reporter to fix the article because it contained inaccuracies. She fixed some of it, but there is still information that is somewhat misleading. For example:
"Australia and a number of European countries already prohibit anonymous sperm and egg donations, giving donor-conceived people access to more information about their identities and family histories."
This is inaccurate, as those donor-conceived people are conceived with US and Danish donors, as their donor pools dried up, e.g., in Australia, Canada, and the UK.
So no, DCP in those countries do not "have access to more information about their identities and family histories." They're now in the same position as everyone else conceived with US and Danish sperm. Additionally, sperm banks and clinics in Australia and the UK are hiding the origin of the imported sperm by changing the original donor numbers. (See above).
Colorado's new law still mandates/promotes 18 years of almost impossible "anonymity".
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BOOK: Counseling Donor Family Members
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Published by Ethics Press, this guide will be of interest to therapists, counselors, psychologists, sociologists, physicians, and other mental health professionals who may encounter this topic in their specific settings with patients who have a variety of presenting problems, as well as professionals in the reproductive medicine industry.
And yes, this guide is also helpful for donors, parents, and donor-conceived people. Understanding the layers of emotional depth and the specific challenges that all stakeholders might face is very helpful when maneuvering through your own personal journey.
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LGBTQ2IA+ Outreach
We were again at the June Boulder Pride event in Colorado!
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2024 Published Articles
1/4/24
DNA Matters: Psychological Differences in Donor Families
Accurate and updated mental health information is vital for families and donors
1/25/24
The Ethical Sperm Bank: An All-Open Sperm Bank
An idea whose time has come.
2/26/24
The Problems With Donor-Sibling Groups of 50, 250, or More
Important medical, psychological, and social implications for donor offspring.
3/29/24 What Rights Are Important to Donor-Conceived People? Personal Perspective: A bill of rights for the infertility field.
4/30/24 Accurate Terminology in Egg Donation Families: The person who contributes the egg is the biological or genetic mother.
5/30/24 Gamete Donors Connecting With Offspring and Their Families
Barriers: the perception of rejection, worry, fear, and other concerns.
6/19/24 Donor Families: Mutual Consent Contact
Personal Perspective: Mutually agreed-upon contact can be quite different.
8/5/24
Enhancing Family Connections in Donor Conception
A call for simplicity and transparency in donor-family relations.
8/19/24
Donor-Conceived People: The Search for Ancestry and Identity
Discovering family history enhances self-understanding and connection.
9/18/24 Bypassing Trauma in Donor-Conceived People
The power of early disclosure and donor family connections to reduce trauma.
2023 Published Articles
1/6/23
Why are Sperm and Eggs Still Sold Anonymously?
Personal Perspective: The consequences of donor anonymity.
1/27/23
Cornerstones of the Donor Family: Kindness and Empathy:
From choosing a donor to expanding one's family to include donor relatives.
3/2/23
Tips for Donor-Conceived Adults Who Just Found Out the Truth:
The road might be bumpy for a while, with a multitude of difficult emotions.
4/3/23
Donor-Conceived People Who Have Always Known the Truth:
Being donor-conceived can have inherent challenges, even if told early on.
4/24/23
Egg and Sperm Donors: It's Complicated:
Some common thoughts and feelings surrounding selling one's gametes.
5/8/23
Donor-Conceived People: Curiously not Curious:
Some insist that they are not at all curious about their donor origins.
6/12/23
Parents of Donor-Conceived People: Researching the thoughts and feelings of biological and non-biological parents.
7/10/23
Reaching Out to Sperm and Egg Donors: Weighing the risks and rewards when deciding whether to attempt contact.
7/27/2023
Why Is There a Shortage of Black Egg and Sperm Donors?
Creating a more diverse donor landscape.
8/7/23
Donor-Conceived Children Meeting Their Half-Siblings
Widening one's family circle with enriching, lifelong relationships.
9/5/23
Gamete Sellers: It's More Than Just a Financial Transaction
Common themes, topics, and issues that arise with former egg and sperm donors.
10/2/23
Sperm Banks, Egg Facilities, and the Backfire Effect
Why have gamete sellers been resistant to evolving ideas about donor families?
11/1/23
Contacting a Gamete Donor for the First Time: The Letter.
You might not get a second chance to make a first impression.
12/4/23
Donor Offspring: Curiosity, Connecting, & Attachment Theory
Securely attached individuals are more likely to have a positive experience.
2022 Published Articles
3/6/22
Supporting Donor Family Members:
Adequate counseling and education are vital.
3/25/22
A Brief History of Donor Conception:
Looking at eight centuries of manipulating sperm.
4/19/22
Words Have Power in Sperm and Egg Donor Families:
The language of reproductive medicine can be tricky.
5/5/22
Happy Mother's Day to Solo Moms (of Donor Kids):
Personal Perspective: A special shout-out to single mother (only) parents.
5/27/22
Donor Conception: Questions for Prospective Parents:
Issues and themes to ponder when considering using donor gametes.
6/23/22
Truth and Honesty in Families of Donor-Conceived Children:
Early disclosure is crucial for building a happy and healthy family.
7/21/22
A Dearth of Adequate Gamete Donor and Recipient Counseling:
Education and counseling before selling or buying sperm and eggs is crucial.
8/25/22
Are You Thinking About Donating Your Sperm or Eggs?
A few practical, ethical, emotional, and medical issues to consider.
9/26/22
Nature and Nurture in Donor Families:
Biological and non-biological parents matter.
10/26/22
Tips for Parents of Adult Donor-Conceived People:
Are you about to disclose, or do you have a child who just found out the truth?
11/28/22
DNA: Donors Not Anonymous:
Sperm and egg donor anonymity has not been possible since 2005.
12/13/22
Secrecy v. Privacy in Donor Families: Walking the fine line between privacy and secrecy is inherent in donor families.
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April
Wendy: Panel “Trail Blazers”
Ryan: Panel "Male Perspectives on Adoption, Assisted Reproduction, and NPEs"
The Untangling Our Roots (UTOR) conference, Denver, CO.
June
Wendy & Ryan: The 2024 LGBTQ2IA+ Families Then and Now webinar series that explores the changing landscape of LGBTQ2IA+ parenting.
July
All Together: The Family Science Insights Podcast "Donor Conception Chronicles: Open Dialogues and Ethical Choices in Creating Families."
October
Colorado University Law School lecture, Bioethics and the Law class
2025
Counseling Donor Family Members
The 33rd World Congress on Controversies in Obstetrics, Gynecology and Infertility (COGI). Rome, Italy.
Invites:
11/24: The American Association for Marriage and Family Therapy
11/24: The 32nd World Congress on Controversies in Obstetrics, Gynecology, and Infertility (COGI)., Lisbon, Portugal.
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2 New Research Study Invites!
Two understudied groups:
1. Gay dads (single or coupled) in touch with their egg donors
2. Single Fathers by Choice
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Single Father by Choice Research US & AU- earn $50!
A collaboration between Victoria University, Melbourne, Australia, and the Donor Sibling Registry.
We want to hear your story!
We’re looking for participants in the US and AU for a study that seeks to understand the experiences of single fathers by choice. In particular, we’re interested in understanding your reasons for starting a family on your own, what fatherhood has been like for you and your family, how others have responded throughout, and what impact these experiences have had on your life.
This study contributes to a Master of Clinical Psychology research project by Olivia Cosic, under Dr. Bruce Walmsley's supervision at Victoria University, Melbourne, Australia. The study is in collaboration with the Donor Sibling Registry. It will involve a confidential Zoom video interview between you and the researcher which will take around 60 minutes. The researcher will audio record the interview and take detailed notes. The data will be transcribed verbatim and analysed. Audio recordings will be securely destroyed at the end of the study.
All participants receive a $50.00 Amazon gift certificate as a thank-you for your time!
Your story matters.
If you would like to participate in this study and meet the above criteria as a single father by choice, please contact Bruce at bruce.walmsley@vu.edu.au
This study has been approved by the Victoria University Human Research Committee. Ethics approval # HRE23-007.
Gay Father Research US & AU- earn $50!
A collaboration between Victoria University, Melbourne, Australia and the Donor Sibling Registry.
We want to hear your story!
We’re looking for participants in the US and AU for a study that seeks to understand the experiences of gay fathers (single or coupled) who used an egg donor, and who have made subsequent contact with her. In particular, we’re interested in understanding when and how you made contact, your reasons for making contact, what this contact has been like for you and your family, and what impact this has had on your life.
This study contributes to a Master of Clinical Psychology research project by Nika Papadatos, under Dr. Bruce Walmsley's supervision at Victoria University, Melbourne, Australia. The study is in collaboration with the Donor Sibling Registry. It will involve a confidential Zoom video interview between you and the researcher which will take around 60 minutes. The researcher will audio record the interview and take detailed notes. The data will be transcribed verbatim and analysed. Audio recordings will be securely destroyed at the end of the study.
Each participant/couple receives a $50.00 Amazon gift certificate as a thank-you for your time!
Your story matters.
If you would like to participate in this study and meet the above criteria as a gay father/gay male couple who sought contact with the egg donor of your children, please contact Bruce at bruce.walmsley@vu.edu.au
This study has been approved by the Victoria University Human Research Committee. Ethics approval # HRE23-014.
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Your Family: A Donor Kid’s Story is a sweet and light-hearted picture book that answers the question "Where did I come from?” and then gently introduces the concepts of half-siblings and donors openly and honestly. The book starts with the parent’s desire to have a baby, and the use of a donor, and then broaches the topic of half-siblings and biological parents/donors. A perfect book for donor-conceived children and their parents in all family types to learn about how they were conceived and to understand that being curious about their unknown genetic origins and relatives is natural.
Just as there are many family types, there are also many ways to define a child’s family and their donor relatives. Reading this book with your young donor-conceived child can initiate or supplement important and ongoing dialog about these genetic connections. These early conversations are integral for creating a happy and healthy donor child and family.
"A lovely book for children who were conceived with donor sperm or egg. Parents in all kinds of families will find it very helpful in explaining their child’s conception story in a gentle simple and positive way."
—Jane Mattes, L.C.S.W., psychotherapist and Founder/Director of Single Mothers by Choice
"Having worked with Wendy Kramer for many years I know her organization, the Donor Sibling Registry, is valuable to the LGBTQ parenting community. We’ve published family stories that talk about how DSR has brought joy to not just the half-siblings discovering each other but to their gay parents as well. Kramer’s children’s book Your Family: A Donor Kid’s Story is an important contribution to the LGBTQ community and a great addition to the homes of all parents with donor-conceived children."
—Angeline Acain, publisher and editor, Gay Parent Magazine
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Finding Our Families: A First-of-Its-Kind Book for Donor-Conceived People and their Families
Millions of people have been born with the help of donor sperm or eggs, including Wendy Kramer’s son. Realizing the unique concerns of being or parenting a donor-conceived child, Kramer launched what would become the world’s largest database for connecting donor-conceived people, the Donor Sibling Registry (DSR).
Finding Our Families provides additional support for this growing community. With compassion and insight, the authors draw on extensive research to address situations families face throughout a donor-conceived child’s development, including the search for a biological parent or half-sibling and how to forge a healthy self-image.
"The book successfully honors its promise to deliver the tools necessary to help donor-conceived children discover and explore their genetic legacies.” —Publishers Weekly
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Donor Family Matters
The story of Wendy Kramer and her donor-conceived child, Ryan, who eventually found his biological father and [now 29] half-siblings. Wendy and Ryan created the Donor Sibling Registry, the world’s largest platform for mutual-consent contact of sperm, egg, and embryo donors, donor-conceived children and adults, and their parents.
Educate the child. Raise him or her without biases of any kind. Teach him or her to trust in others but to rely on self. Instill in him or her a sense of humor and the ability to enjoy life.”
Penned on a sperm bank intake form, these words of advice from Donor 1058 to the future recipients of his donations became a parental motto for one particular recipient, Wendy Kramer, who would go on to found the Donor Sibling Registry (DSR). With more than 92,000 members in 105 countries, the DSR is the world’s largest platform for sperm, egg, and embryo donors, donor-conceived children and adults, and their parents to connect and share information through mutual consent contact. In her role with the DSR, Wendy has become a leading advocate for donor families and for reformation of the modern profit-driven donor conception industry.
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