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!
Many egg donor agencies and clinics are now writing the DSR into their contracts so that recipients and donors have anonymous access to each other.
The advantages to using the DSR include the fact that our service charges $175 for the recipient family and $175 for the donor for a 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 be sent to their donor and they can receive answers all while remaining anonymous to each other.
Both recipients 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
Parents usually sign up to the DSR first, as full paying members, and then post with a donor number and their clinic. Then, the donor also signs up, as a non-paying member, but she'll then have a DSR username. When the recipient family mails me the donor's $175 (PO Box 1571, Nederland CO 80466), they just need to tell me the donor's DSR username, so that I can then activate her account to full membership.
After I receive payment, I contact the donor to let her know that I have received payment for her account, that I have also updated the account to full membership status, and let her know that she should now add her posting to the DSR. I then email the parents that mailed me the check, to let them know that too.
Important: The donor and the recipient parents need to post with the same donor number 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.
A. 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 Mother agrees to pay Donor’s membership fee with the Donor Sibling Registry.
B. Future Contact by the Child
Donor agrees to be contacted by the Child after the Child reaches the age of 18 if the Child so desires. The Child may communicate with Donor through the Donor Sibling Registry or another mutually agreed upon method of communication.
C. Future Contact between Intended Mother and Donor
The Parties do not currently intend to have ongoing contact, but if either Intended Mother 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 through the Donor Sibling Registry or another mutually agreed upon method of communication.
D. Agreement Not to Seek Identifying Information Not Otherwise Disclosed
Donor agrees that she will not participate in any act or claim that may lead to the disclosure of information about Intended Mother or any Child other than that agreed upon in this Agreement or in the Parties’ communications through the Donor Sibling Registry.
Intended Mother agrees that 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.
E. 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 Mother through the Donor Sibling Registry, or 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 Mother through the Donor Sibling Registry or to contact and inform [clinic] so they can inform Intended Mother.
If any Child born from Donor’s eggs suffers serious medical or mental health
conditions that may be genetically related to Donor, Intended Mother agrees to contact Donor through the Donor Sibling Registry or to contact and inform [clinic] so they can inform Intended Mother.
F. Update Address and Contact Information
Intended Mother and Donor agree to keep [clinic], and the Donor Sibling
Registry, and successors to any of these entities, informed of their address changes.
G. Conflict between Documents
If any portion of Paragraph 11 of this Agreement regarding future contact between Intended Mother, Child and Donor conflicts with documents previously signed by the Parties with [clinic], the terms of this Agreement will prevail.
1. Should we make it a point to have Donor update information on DSR annually, say every June 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.
2. 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. 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.
3. 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?
The donor will need to sign 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. You just join and post the regular way. 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.
4. 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, sent through the mail. (PO Box 1571, Nederland, CO 80466).
5. 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.
6. 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 go for the offspring too- 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.
7. 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.
8. 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.
9. When do WE register?
Whenever you want to. Some post before pregnancy, some during, some 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." Katy Encalade, Program Director:
"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." - Andi, Oregon Reproductive Medicine
- Christine The Fertility Center, MI
"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." - A Former Egg Donor
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. We are also working on a partnership with a team of counselors that will be available for phone consults.
1/14: Some Thoughts About "Where are My Eggs" a blog by Ellen Glazer, Author of "Having Your Baby Through Egg Donation".
1/13 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."
4/12 The Atlantic: Mother's Helper: A Shocking Thing I Learned After Giving Up My Eggs (pdf)
2012 Dr. Ariel Weissman, Wolfson Institute, IVF Center, Israel: Oocyte Donation Survey - Results (pdf)
["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.]
3/12 USA Today: In vitro babies denied U.S. citizenship (pdf)
5/11 Science Daily: High Risks Associated With Egg Donation to Women With Turner’s Syndrome, Research Reveals (pdf)
10/10 American Fertility Association: Talking With Children About Ovum Donation (pdf)
6/10 Human Reproduction Update: Clinical and immunologic aspects of egg donation pregnancies (pdf)
5/10 Online Post: Selling my eggs (pdf)
5/10 Women Make News: Selling Eggs: The Untold Risks of Donation and Fertility Treatments and Need for Tracking (pdf)
2009 Med Law: Donation of Eggs In Assisted Reproduction and Informed Consent (pdf)
2009 Human Reproduction, Dr. Jennifer Schneider and Wendy Kramer: US oocyte donors: a retrospective study of medical and psychosocial issues (pdf)
8/09 Donor Sibling Registry: Letter to Knesset in Regards to Proposed Israeli Regulation of Egg Donation (pdf)
[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]
12/08 The Wall Street Journal: Ova Time: Women Line Up To Donate Eggs -- for Money (pdf)
11/07 Congressional Briefing on Human Egg Trafficking: It’s Time for an Egg donor Registry and Long-term Follow-up (link to website)
10/07 Center for Genetics & Society: Sometimes, it's hush-hush over donor eggs (pdf)
2007 Alliance for Humane Biotechnology: Petition for Human Egg Extraction Health Registry & for Warnings on Ads and Notices Seeking Egg Donors (link to website)
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.)
Susan Katzman is an attorney licensed in California. Her practice is focused on assisted reproductive law in the areas of egg donation, sperm donation, and surrogacy. www.susankatzmanlaw.com