No matter what type of contract you signed with your egg clinic/agency- you always have the right to make yourself available for mutual consent contact on the DSR!
Current News, Surveys and Information
- 2016: Are there any egg donors out there with a similar experience with severe OHSS and/or other serious medical issues following egg donation? Any parents or egg donors out there who suspect that eggs or embryos were stolen and sold without your knowledge?
- 2016: Update on Brittan and her family: Teen reunites with her egg donor for graduation.
- 2016: Egg Donation: Reporting Discrepancies & Medical Issues. Newest Huffington Post contribution.
- 2016: Are You Thinking of Selling Your Eggs? This Huffington Post contribution should be read by all those considering "donating" their eggs.
- 2016: Medical Alert from a Former Egg Donor: If you used the Cooper Center for IVF between 1997-1999, or know anyone else that did, please see the postings for this clinic on the DSR. Contact Wendy if you need more information. "I have been a member of the registry since 2004. I donated eggs in 97, 98, and 99. I am concerned about the children that may have resulted from those cycles. I have been diagnosed with Autosomal dominant polycystic kidney disease (ADPKD). I have 4 children, 2 have the disease. One does not and the youngest has not yet been tested. He is 15 and conceived from the cycle in 99. I kept 3 eggs and donated 20. I contacted the clinic immediately after I found out. They completely accepted the information but did not give me any real Indication that they would relay the information. I lost my mom in 2005 to aneurysm as a result of the disease .My niece had aneurysm surgery 4 years ago. She was the youngest diagnosed with serious complications. My sisters are both in renal failure waiting for transplants."
- 2015: From one of the oldest Egg Donor Offspring on the DSR:
I was conceived by a donor egg in 1988. My mom says she does not remember any of the basic information about the egg donor (ethnicity, medical history, etc). I have called the clinic where I was conceived multiple times, left messages and never gotten a response back. The only information I have is the serial number of the petri dish I was made in, because the clinic gave my mom the petri dish as a souvenir. I am G**80.
I got that number tattooed on the back of my neck, I guess it was my way of trying to re-establish control and ownership of my own body after I had been told I had no legal rights (seeing as I was the product, and not one of the people involved) to my own genetic history and information.
I love my mom and her family, but it has always been extremely obvious that I do not share genetic material with them; aside from physical appearance, we have absolutely nothing in common in terms of shared interests, aptitudes, dislikes, taste or personal traits. We are polar opposites to a comical degree.
- 2014: The Katie Couric Show: This piece featured a teenager and her parents meeting their egg donor, and her two daughters, for the first time! Very emotional - and shows how important these connections can be - for all involved. Read about it in USA Today and in the June 5th Tennessean: Nashville Teen Finds Her Egg Donor. DSR members can watch the video in our Video Library (Click on News Tab).
Many egg donor agencies and clinics are now writing the DSR into their contracts/consent forms so that Recipient Parents and Donors have anonymous access to each other.
The advantages to using the DSR include the fact that our service charges $175 for the Intended Parents and $175 for the Donor for permanent DSR membership. They can contact each other at any time, with no middlemen. They can share photos and other pertinent information, i.e. medical updates, all while remaining anonymous. Also, if children have questions, they can contact the donor anonymously on the DSR (with their parents if under 18) to receive the answers they're looking for.
Both Recipient Parents and Donors should know that they will also have the choice of connecting with each other earlier than the child's 18th birthday. We know that many donor children are curious long before their 18th birthday and many have made successful connections during their teen (and even earlier) years. We believe that 18 is an arbitrary number and that parents know their children best as far as what age might be best appropriate for their child to reach out. This empowers all people involved without having the lawyer or clinic bank at the helm of their family information.
How It Works: Step-By-Step
Recipient Parents usually sign up to the DSR first, as full paying members, and then add a posting (log in and click on Add a New Posting) with a donor number/ID, under their clinic. Then, the Donor also signs up, as a non-paying member, choosing her DSR username. When the Recipient Parents mail me the Donor's $175 (PO Box 1571, Nederland CO 80466, or Amazon.com gift card for those outside the US), they just need include the Donor's DSR username (ask your clinic/agency/attorney for this), so that I can then activate her account to full membership.
After I receive payment, I then contact the Donor to let her know that I have received payment for her account, that I have also updated her DSR account to full membership status, and I let her know that she should now also add her posting to the DSR. (Log in and click on "Add a New Posting"). I then email the Recipient Parents that mailed me the check, to let them know that I received the check, and emailed the Donor. I also ask the Recipient Parents to make sure that they have also added their posting to the DSR. Both Recipient Parents and Donors must add their postings to the DSR. Important: The Donor and the Recipient Parents need to post with the same donor number/ID and facility/clinic- so that they are then on the DSR as a "match." They can then share the donor's Q&A, the medical information page, photos, and emails - all while remaining anonymous to each other. (Read this information in French) (The DSR Brochure in French)
Sharing medical information on the DSR can be extremely important for medical reasons:
- 2016: "As a donor I updated my medical records between donations. They did not pass those updates on to previous recipients NOR recipients that came after those updates. I only know that because a family that came after that insisted on contact. She showed me all of the info she had gotten on me. Those updates were not included. Any of the updates I have done since have not been passed on to her either."
- 2016: "I was an egg donor over 20 years ago... I called the office where I donated and let them know about my son having ADHD, anxety, bipolar, etc. so they could lett the offspring's family know.. I am assuming, because it was 100% confidential...they really didn't seem like they were interested or were going to pass the information on."
- 2016: "I donated my eggs four different times at Genetics & IVF Institute in Fairfax, VA in the 90s/early 00s. Since then I discovered I carry a gene which means I'm at a much higher risk for getting several types of cancer. Since then I've tried to contact Genetics & IVF Institute so that they can relay this information to my offspring (they have a 50/50 chance of inheriting it) but they were not interested and it was obvious that they were not going to inform the families despite the fact early screening could potentially save these children's lives.
I've recently turned 42 years old and I was just told this week that I most likely have Ovarian cancer (this will be confirmed through pathology after surgery) and that I will need my ovary removed asap. I don't know if this is because of donating my eggs when I was younger or because of my family history. It's very upsetting either way."
- 2016: "I have been a member of the registry since 2004. I donated eggs in 97, 98, and 99. I am concerned about the children that may have resulted from those cycles. I have been diagnosed with Autosomal dominant polycystic kidney disease (ADPKD). I have 4 children, 2 have the disease. One does not and the youngest has not yet been tested. He is 15 and conceived from the cycle in 99. I kept 3 eggs and donated 20. I contacted the clinic immediately after I found out. They completely accepted the information but did not give me any real Indication that they would relay the information. I lost my mom in 2005 to aneurysm as a result of the disease.My niece had aneurysm surgery 4 years ago. She was the youngest diagnosed with serious complications. My sisters are both in renal failure waiting for transplants."
- 2015: "I am an ovum donor and I have Ehlers-Danlos Syndrome types 2 and 3, and my two children do as well. This was only discovered in my 30s. I so wish I could tell other offspring."
(If you have the most common varieties of Ehlers-Danlos syndrome, there's a 50 percent chance that you'll pass on the gene to each of your children. -Mayo Clinic)
Method of Communication
The Parties agree that future communication will occur through the Donor Sibling Registry located at www.donorsiblingregistry.com. If the communication is for medical purposes described in paragraph 11(E) of this Agreement, it may occur through the Donor Sibling Registry or through [clinic]. Donor agrees to register with the Donor Sibling Registry after receiving notice of a pregnancy which results from Donor’s performance under this Agreement. Intended Parents agrees to pay Donor’s membership fee with the Donor Sibling Registry.
Future Contact by the Child
Donor agrees to be contacted by the Child after the Child reaches the age of 18, or at any time, if the Child so desires. The Child may communicate with Donor through the Donor Sibling Registry or another mutually agreed upon method of communication. All correspondence on the DSR is anonymous.
Future Contact between Intended Parent and Donor
If either Intended Parent or Donor desires contact with the other, she may communicate that desire through the Donor Sibling Registry. If the Parties are mutually agreeable to having contact, then they may communicate and share contact information through the Donor Sibling Registry or another mutually agreed upon method of communication.
Agreement Not to Seek Identifying Information Not Otherwise Disclosed
Donor agrees that he/she will not participate in any act or claim that may lead to the disclosure of information about Intended Parent or any Child other than that agreed upon in this Agreement or in the Parties’ communications through the Donor Sibling Registry.
Intended Parent agrees that he/she will not participate in any act or claim that may lead to the disclosure of Donor‘s contact information other than that agreed upon in this Agreement or in the Parties’ communications through the Donor Sibling Registry. NOTE: A donor conceived person (or donor) can at any time submit her/his own DNA into a commercial DNA company and locate their genetic relatives in this way. Many donors have been located via DNA testing, so donors should know that there are no guarantees for anonymity.
Medical and Mental Health Information
Donor has provided medical information to [clinic] and agrees to provide additional information if requested to do so in the future. Donor agrees to be contacted by Intended Parent through the Donor Sibling Registry, and by [clinic] if the child experiences a life threatening or serious medical condition. Donor agrees to provide additional medical information at that time and will consider providing further assistance if requested to do so.
If Donor discovers new medical or mental health information or any of her children develop serious medical or psychological conditions that Donor’s physician has determined to be genetically related to her, Donor agrees to inform Intended Parent through the Donor Sibling Registry or to contact and inform [clinic] so they can inform Intended Parent.
If any Child born from Donor’s eggs suffers serious medical or mental health conditions that may be genetically related to Donor, Intended Parent agrees to contact Donor through the Donor Sibling Registry or to contact and inform [clinic] so they can inform Intended Parent.
Update Address and Contact Information
Intended Parent and Donor agree to keep [clinic], and the Donor Sibling Registry, and successors to any of these entities, informed of their address changes.
Conflict between Documents
If any portion of Paragraph 11 of this Agreement regarding future contact between Intended Parent, Child and Donor conflicts with documents previously signed by the Parties with [clinic], the terms of this Agreement will prevail.
Should we make it a point to have Donor update information on DSR annually, say every January 1st?
I would say annually, as well as if/when new medical/genetic information becomes available on the donor, or anyone in her immediate family.
Should we do the same?
Absolutely, as if your child has a medical/genetic condition, it is also of the utmost importance that she be notified. The sharing of medical information goes both ways- between all families and their donor and from the donor to the families. There is a "medical page" on the DSR that only the families can add to/edit/update whenever they need. All matching families can see this information. Matching families can also email and share photos, all anonymously. When new information is added to the shared “medical page,” all affected families are notified by the DSR.
Do we (since she is anonymous to us) have her provide email account and password to us so that we may be "linked" to her in order to pay?
No, you will only know what your donor's DSR Username is. The donor signs up to the DSR with a user name and password. Then, you send me the $175 for her permanent membership (telling me her user name) so that I can update her account to permanent status - then she can add a posting to the DSR. (T add a posting to the DSR, you log in and click on "Add a New Posting"). Recipients join and post the regular way. (Log in and click on "Add a New Posting"). You both need to post with the same clinic and donor number so that you are matched to each other on the site - and then you can share all information anonymously. Both Intended Parents and Donors MUST add their postings to the DSR.
Yes, we understand the lifetime membership for both she and us is typically paid by us - credit card, ok?
The recipient membership can be paid right through the site. The recipient family pays for the donor’s membership via check made out to the DSR, sent through the mail. (PO Box 1571, Nederland, CO 80466), or online via an Amazon.com gift certificate.
What do we eventually give to our child to seek donor information in the future?
Your child can have access to the DSR with your username and password and anonymous contact with your donor at any time.
Is there anything that prevents the child from accessing/seeking the above information earlier than age 25?
Legally- no. Your child is not signing any agreement. Many clinics say that the contracts signed by the parents also apply to the offspring too (even though the children have never signed any contracts), but this has not been tested in court. In my opinion, because it has no merit. Ethically- no. Many donor conceived-children have many questions about their ancestry, medical backgrounds and genetics. It is a normal desire to want to know where you come from.
Parallel the situation to adopted people- some are not curious, some are very curious. Many donor-conceived children are curious at a young age. It doesn't mean that you are not his/her parents; it just means that they have questions with answers that might help them form their identities. Part of defining who you will become as an adult, is knowing where you come from. A donor child feeling curious about, and wanting to reach out to learn more about her ancestry, medical background and first degree genetic relatives should be honored and supported. Thousands of families with children under 18 have connected on the DSR with very positive results!
A key factor for us in this process is that the donor agrees to be contacted by the child after the child reaches the age of 18 if the child wishes to do so. However, we are still unclear about who (and where) keeps the details of the donor for potential future contact by the offspring and what records are kept (e.g. social security number or something like that in case there are future changes to phone, email or address). Would the DSR keep these records and provide them to the child at 18?
We just would like to know how our child would be able to get the donor details in the future and how it can be ensured that the donor can be contacted even if she changes address, email, etc.
The DSR provides a link between the donor and the recipient family right from the start! So you can share information from day one, as there is no need to wait until age 18. We feel that 18 is an arbitrary age set by the industry to cover their own liabilities. We have done enough research to know that contact before the age of 18 can be important, profound, and life changing (and life saving). After 16 years, 52,000 members and many research studies, we are baffled that this industry still works so hard to keep donors from the families.
The legal verbiage gives you a template so that you can then be empowered to decide how and when to have contact with your donor. We try and make it so that there is no middleman needed, so you need to set up the contract so that clear rules for contact are set up right from the start. Many donors change their minds after 18 years, so it's ridiculous to ask a young donor to make decisions now, about how she will feel in 18 years. That's why establishing contact from the beginning can be crucial. The donor should have it in her contract to always keep her contact information current on the DSR.
We will always have the records (although we do not keep SS#s), but you don't have that type of contract with the DSR. We have never released personal information on any of our members. We feel it's the families and the donors who need to share this information with each other.
What type of reassurances are there that the DSR will exist in 25 years?
Yep, the “bus clause." Although I don’t have any plans to be hit by a bus…. if it's not me, someone else will be running the DSR. Unlike the sperm banks, clinics and doctors (many have already destroyed records) our records will never be destroyed.
Considering our desires, at this time, what information should the Donor register?
We have a donor "Q&A" sheet with 25 or so of the questions that we hear most from offspring. And again, the photos page and medical pages. These are pages that only you two can see, not any other DSR members.
When do WE register?
Whenever you want to. Some post before pregnancy, some during, some wait until after a baby is born.
Each year I see more intended parents who want to make sure their child one day ''has the option'' to meet their donor if they wish. As an agency I am grateful that there is a program like The Donor Sibling Registry that can be an advocate for the child, donor, and intended parents who desire this type of relationship.
More and more of our recipient and donor pairs hope to sign up for the Donor Sibling Registry. We often have comments about how helpful you are as facilitator.
Just wanted to send a note to say how much our clinic appreciates this option for our patients. Currently our office only offers anonymous embryo donation. However, some of our patients would like a more open arrangement. Your site allows patients who trust our office and want to stay with us, to have the best of both worlds. Now they have a place where they can go to control the amount of contact they have with their donor or recipient. It’s the perfect solution for them and we are grateful you offer this option!
Thanks for all you do and the education you have given many in this industry. Your passion and your son's passion has been a great push for all of us.
While exploring the idea of Egg Donation to build a family there are unknown scenarios that families may encounter. It is simple for both intended parents and egg donors to consider their feelings and needs now but may not fully understand what future questions there might be. The Donor Sibling Registry allows a safe and comfortable way to allow future communication when it becomes apparent it would be beneficial to a parent, the egg donor, or a resulting child. The Registry allows all parties to ask questions, exchange medical information, and possibly meet when the time is right for each. The Donor Sibling Registry allows all individuals to move at their pace and the lifetime membership is a worthwhile investment.
As more egg donors, parents and people conceived via egg donation come to the DSR, we want to make sure that they have all the educational materials and support that they might need. Below are several articles relating specifically to egg donation.
- 2016: One Step Forward, Two Steps Back: Moving from Fresh to Frozen Eggs a blog by Ellen Glazer, Author of "Having Your Baby Through Egg Donation".
- 2014: National Post Article: "I thought I just had to sleep it off’: Egg donor sues Toronto fertility doctor after suffering stroke.
- 2014: Some Thoughts About "Where are My Eggs a blog by Ellen Glazer, Author of "Having Your Baby Through Egg Donation".
- 2013: Maisson Nueve: Is Egg Donation Dangerous? "About five hundred egg donations take place in Canada every year, and experts say the process is very safe. But some donors face serious health problems—and doctors may be underestimating the risks."
- 2012: The Atlantic: Mother's Helper: A Shocking Thing I Learned After Giving Up My Eggs
- 2012: Dr. Ariel Weissman, Wolfson Institute, IVF Center, Israel: Oocyte Donation Survey - Results ["In the vast majority of countries, only anonymous donations are allowed, and there has been a long-standing debate as to whether it is ethical to use known donors. In programs that responded to the survey, 91% of the treatment cycleswere conducted using only anonymous donors, probably reflecting worldwide donor recruitment percentages." It so interesting that he frames the ethical debate as one about using known donors, instead about the ethics of using anonymous donors.]
- 2012: USA Today: In vitro babies denied U.S. citizenship
- 2011: Science Daily: High Risks Associated With Egg Donation to Women With Turner’s Syndrome, Research Reveals
- 2010: American Fertility Association: Talking With Children About Ovum Donation
- 2010: Human Reproduction Update: Clinical and immunologic aspects of egg donation pregnancies
- 2010: Online Post: Selling my eggs
- 2010: Women Make News: Selling Eggs: The Untold Risks of Donation and Fertility Treatments and Need for Tracking
- 2009: Med Law: Donation of Eggs In Assisted Reproduction and Informed Consent
- 2009: Human Reproduction, Dr. Jennifer Schneider and Wendy Kramer: US oocyte donors: a retrospective study of medical and psychosocial issues
- 2009: Donor Sibling Registry: Letter to Knesset in Regards to Proposed Israeli Regulation of Egg Donation [A letter written to the Israeli Knesset to help them better understand the needs and rights of egg donors, recipients and those conceived from egg donations]
- 2008: The Wall Street Journal: Ova Time: Women Line Up To Donate Eggs -- for Money
- 2007: Congressional Briefing on Human Egg Trafficking: It’s Time for an Egg donor Registry and Long-term Follow-up
- 2007: Center for Genetics & Society: Sometimes, it's hush-hush over donor eggs
- 2007: Alliance for Humane Biotechnology: Petition for Human Egg Extraction Health Registry & for Warnings on Ads and Notices Seeking Egg Donors
From Ellen Glazer, author of the book Having Your Baby Through Egg Donation
I am a social worker and family building counselor based outside of Boston. Over the past several years, much of my work has been by telephone, with clients calling me from as far as Australia and Hong Kong to discuss their thoughts, feelings and questions about egg donation. I am especially pleased to introduce myself to DSR members. The very fact that you are part of the DSR says that you are approaching egg donation with values and perspectives similar to my own.
If you would like to talk with me by phone, I would like very much to talk with you. Most of my donor consults have focussed on donor selection, questions of meeting the donor --when, where and how--and on the challenges of separating privacy from secrecy. Please contact me by email: EllenGlazer@verizon.net.
(Please note, Ellen does charge a consulting fee.)
Email Wendy for recommendations!