Update on post: Embryo Donation Registry: An idea whose time has come?

December 1, 2012Carole 4 Comments »

Anyone with a compassionate heart understands why couples want to have children and start families. Sometimes these couples need help from ART to conceive. Some of these couples may even need donated  gametes (eggs and/or sperm)  or embryos from non-related donors to establish a family.  The immediate focus for both ART providers and patients is on the process of conception. It’s a difficult  emotional, and expensive process that consumes everyone’s attention as we move through it. But are we missing something?- did we fail to anticipate the future needs of  these kids?  We have decades of experience and longitudinal data about how adopted kids react to disclosures that they are adopted and not biologically related to one or both parents. Evidence is accumulating to suggest that the experience of donor-conceived children may be similar.  What obligation do we have to donor-conceived children? Should these children have a process to get some information or even establish contact with their biological relatives at some point in the future?

What do donor-conceived children want? Longitudinal studies with a large number of individuals are still not readily available but decades of research on adopted kids has demonstrated that being open about adoption earlier rather than later is better for the psychological and social development of adopted children. Numerous smaller studies on donor-conceived children suggest that some, if not most, donor-conceived children also want to know that they were donor-conceived and many of those kids want more details about the donor or about their own genetic history at some point in their life. Only a  minority actually want a relationship with their donor, but most appear to be interested in finding out about and establishing a relationship with half-siblings or full siblings.

Currently, depending on how you were conceived (sperm donor vs. egg donor vs. embryo donation), the chances of getting access to records  about your biological origins will vary. If you were conceived using a sperm donor, and your parent has a copy of the conception medical records, you might have a sperm donor ID number. With this number, you can visit the Donor Sibling Registry, a website that provides a list of sperm donor IDs that other donor-conceived children (or donors themselves) have submitted who are also looking for contact with offspring or half-siblings. If you find a  registrant with a matching sperm ID number, you can find out if the donor or any siblings  want to make contact. Even if you only know the name of the doctor or clinic at which you were conceived, you can still use the registry to look for similar details among other registrants and then if it looks like you may be related, have a DNA test done for confirmation. The Donor Sibling Registry (DSR) website is a portal to connect biologically related individuals who want to connect; no one is forced to establish contact and donors who don’t participate won’t be contacted. The Frequently Asked Questions page is a great resource for more details about the program.

The DSR offers a similar service for egg donor-conceived children, but it involves the active participation of the egg donor who agrees to update her anonymous profile annually. The egg donor’s participation is via a life-long membership to DSR (one time fee $175) paid for by the recipient family. There is no obligation on the donor to establish contact with offspring but only to update medical/genetic information and any other information that they wish to share annually. The DSR proposes that ideally, ART clinics add language to their egg-donor participant contracts that requires participation in the registry for donor eligibility. The DSR provides sample contract language on their site for patients to incorporate into the egg-donor’s contract.

The least used method of conception is via embryo donation so it is probably not surprising that there are no equivalent embryo donation registries currently. Until recently, most embryo donations were derived from excess embryos donated by infertility patients using their own gametes. My previous post discussed creating embryos for donation using gametes from egg and sperm donors and sharing embryos among several couples. This more high volume approach, if it becomes widely accepted, may increase the number of embryo donations (from shared double donor cycles) that occur.

In more traditional embryo donation, only a minority of these donating patients would have used either a sperm or egg donor and a very few these might have used both an egg and sperm donor to create the embryos. The only  link between the donating patient/couple and the donor embryo may be in the medical records kept by the physician or clinic. The FDA only requires that medical records regarding ART conceptions be kept for 10 years before they can be destroyed. Some professional guidelines recommend 20 years, but this is not enforced. When you think about the fact that most donor-conceived children may not be able to legally act on their interest in finding their biological roots until they reach legal age at 18, both 10 and 20 years seems an inadequate time for record retention. Ideally, patients or couples using any kind of donor should ask for and keep their own medical records just in case it might be necessary to get more information about the donor in the future.

Embryo donor-conceived children probably have the most difficult situation when it comes to locating biological relatives. It may be time to create an identification number for donated embryos that can be linked back to anonymous donors and register these numbers at a site like DSR. Why? Because as the years go by, things change. Either the donor or the donor-conceived child may develop serious medical conditions –information which, if shared- could impact the health of the other. Either the donor, the child or other half-siblings or whole-siblings may decide that they want to establish some sort of contact. Having a registry does not require that contact be established, it merely provides a link that allows contact to happen at all, if both parties agree.  In the same way that registry language can be added to egg donor contracts, it should be possible to ask embryo donors to agree to be registered just in case.

This sentence from the DSR site on dealing with disclosure about donor origins may seem jarring but sums up the potential conflict between parents and their donor conceived children, “To you, the donor might just be a “piece of genetic material,” but to your child, it is one half of their genetics and their ancestry.” It might be time to recognize that genetics really do matter to the vast majority of people, and this attitude is reinforced by our culture and history.  As parents, we may find that even an abundance of parental love is not going to erase a child’s questions of where they came from biologically. In order to provide for that future child in every way, we should anticipate their future needs and develop systems and processes in ART that allow that child to find their biological roots if that becomes important to them in the future.

UPDATE:

Hello Readers,

When I published this post on Dec 1, I was aware of only one registry that is available to parties in embryo donation, namely the DSR which functions primarily as a registry for egg and sperm donors. Today,  I became aware that a specific embryo donation registry will be available in 2013 via the email below  which I have copied (with permission from Dr. Finger and EDSC) for your information.

I suggested to Dr. Finger that it would be helpful to patients to provide answers to the FAQs page on the EDSC website he links to in his email. His response: “Regarding details of the implementation of the registry, those will come in a letter to the clinics soon.  Some of those are the prerogative of the Knoxville office rather than mine, and I’d prefer to wait until the letter is drafted. The reason the FAQs don’t link to answers is that we want inquirers to call Ms. Lesslie or me and get individualized service, which is what we are grant funded to provide.  One size does not fit all, and we want to hear from individual families and help them to get to the right places for them to be served.  The FAQs are just to suggest the sorts of questions they might consider asking.”

I do not provide the information about the registry as an endorsement of any particular registry. Any one using these or any other ART services should carefully evaluate the risks, benefits and alternatives to using these services. 

Dr. Finger’s announcement email to me:

“Dr. Wegner,

Hello, this is Dr. Reg Finger, physician researcher and lecturer working in the area of embryo donation.  I am on independent contract with a federal grant-funded project called Embryo Donation Services Center (see www.embryocenter.org), headquartered in Knoxville, TN, though I myself work from home in Colorado Springs.  This project is specifically intended to promote the practice of embryo donation to other couples, whether accomplished through a national program or a local clinic, and is under mandate NOT to specifically promote or solicit business for any one program or agency.

The EDSC has received funding and federal approval to launch an embryo donation registry, just such as you called for in your recent article in Fertility Lab Insider.  Some last minute fixes to the mechanisms are being accomplished now, and I’ve been advised to let you know that we should be ready to enroll clinics in the registry very soon after January 1st.  Clinics will, with the consent of individual families who have stored embryos and want to donate them to other couples, enter these embryos into the electronic registry.  Individuals anywhere can browse this registry, but can only find out where the embryos are located and arrange to receive them, with the assistance of a clinic that has joined the registry. 

We thought you would be interested to know.

Thank you,

Reginald Finger, MD, MPH
Physician researcher and lecturer
Embryo Donation Services Center”

 

© 2012, Carole. All rights reserved.

4 Responses to this entry

  • It Is What It Is Says:

    Just as I believe there should be a national clearinghouse for available donated embryos (and not one controlled by the religious right), as someone who is pregnant through anonymously donated embryos (donor egg/donor sperm), I am frustrated that I am not able to have access to the egg donor’s profile (I have the sperm donor’s ID and can access his data through the sperm bank but the egg donor’s info requires the donating couple to provide and the wife refused, I am not sure why we treat egg and sperm donor information or access differently)).

    From my clinic I was able to get a copy of the egg donor’s drivers license which included her picture, birth date, hair/eye color, height and weight. Separately I requested her blood type and was given that. I have no other information on her.

    As an adult adoptee in a closed adoption, I KNOW how important her picture will be to our son. However, more information about her background (the likes of which would be in her donor profile) would also be abundantly helpful (anonymous would be fine). I have to say I was shocked that a mother (of girl/girl twins conceived through these same embryos) would refuse to give another mother information on the egg donor. And, I was disallowed the opportunity to contact the egg donation agency myself to see if the egg donor would be willing to allow it be provided to me.

  • Carole Says:

    Dear It is what it is,
    Thanks so much for your comment sharing your personal experience. I hope that what you have to fight for now will be freely given in the future. I think that as donor-conceived children and their families become more vocal about what these kids need, ART professionals will revise the way in which third party reproduction is provided. I think we treat egg and sperm donors differently because sperm banks have been around relatively longer than egg donation. Eventually every sort of third party reproduction will be more transparent and anonymous donation will be a thing of the past–if the legislation and progress in that direction globally is any indication. Best wishes to you and yours!!

  • GG Says:

    THanks for your thoughts on this. I have no problems with the embryo donation process as it is now practiced. I don’t believe it is “dominated by the religious right”. Our clinic has been very pleased with the options out there now for our patients. I sure agree that open embryo donation is best, but the fact remains that some couples would not donate under those conditions. If I were the embryo/fetus/ child/adult – I would be much happier with that than the prospect that I would never have been born! I don’t think we should mandate that all ED’s be open.

  • Carole Says:

    Hi GG,
    Thanks for your comment. We are having a parallel conversation on one of the ART professional sites and while most agree that registries may be a good idea, there is little consensus about how they should be implemented. Thanks for bringing your perspective to the conversation. Carole

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