Although the Donor Sibling Registry (a 501(c)3 charity) has grown steadily over the past 13 years, it has been in the past few years that we have experienced exponential growth. There are many reasons for this, but one that makes me especially happy is that egg donation facilities are sending more and more people our way. And they are doing so in the most helpful and exciting way: by including the DSR in donor-recipient contracts.  I am thrilled to report that as of this writing, at least 24 attorneys, clinics and agencies are providing their donors and IP’s with DSR brochures and/or are offering (or allowing) them the option of signing on with the DSR right from the start of a pregnancy.

What does this mean?  So much!  For one thing, it means that there will be increasing numbers of people who will know that when they sign on with the DSR, they will have an immediate match – instant open lines of contact with each other.  For them, the uncertainty of not knowing if and when they will match with donors, recipients, or siblings will be gone—replaced by the assurance that they have an on going connection to each other. This can be incredibly important when it comes to sharing and updating medical information, and even for sharing photos and emails- and with no middleman needed! These connections can be anonymous if the participants prefer—or open.

This—in and of itself—is great news from my vantage point. However, I believe that this growing trend’s significance extends far beyond the convenience of brochures and contracts. What it means is that egg donor clinics and agencies are acknowledging the bonds that exist between and among people that are genetically connected. Rather than denying these bonds, as so many did in the past, they are joining us in helping identify new dimensions of kinship.

Quite often, I am asked to recommend facilities, and I always recommend ones that have contacted us to order brochures, and who have indicated that they are properly educating their parents and donors and facilitating the use of the DSR.

We are delighted to be working with families from the following clinics, agencies and law offices and we are hopeful that more and more will sign in on coming weeks and months. 

Genesis Egg Donor & Surrogacy Group, Inc., Genesis Fertility & Repro. Medicine, An Eggceptional Match, LLC, Conceptions Center for Ovum Donation, Egg Donor Solutions, Oregon Reproductive Medicine, The Fertility Center, MI, Servy Massey Fertility Institute, Idaho Center for Reproductive Medicine, Exceptional Donors, Inc., Creating New Generations, Fertility Connections, Repro. Med. & Infertility Assn. (MN), Fertility Family Services, Northeast Assisted Fertility Group, Inc., San Diego Fertility Center, University of CO Health Sciences Center, Fertility Centers of IL, Advanced Fertility Center, Wisconsin Fertility Institute, The Center for Egg Options, LLC, Northeast Assisted Fertility Group, Inc., Creative Family Connections, Law Offices of Amy Demma, P.C., Susan Katzman, Attorney, Law Office of Catherine Tucker, and Infertility2adoption.  (Please let me know if I have mistakenly left you off the list!)

So a big thanks to each of these forward thinking practitioners and their progressive programs! We believe that they are providing a wonderful service to their clients and that this service will have a ripple effect through the donor conception community. The clients who learn about the DSR from them will tell their friends who in turn will spread the word.  Our hope is that as the word spreads and people learn that joining the DSR is a no risk, high reward option, more and more programs will include us in their office waiting rooms and their websites and most important, in their contracts.

Three testimonials:

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, Egg Donor Solutions

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

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! –Christine, The Fertility Center, MI

New Family Trees: Lessons from the Donor Sibling Registry’s First Decade
http://www.reportingonhealth.org/2013/09/05/children-conceived-sperm-egg-donation-find-community-online

By William Heisel
September 06, 2013

Wendy Kramer did something radical in 2000. Prompted by her own experience as a mother who had given birth to a child with the help of a sperm donor, she created an online, voluntary registry system for the children of egg and sperm donors. It was a small operation at first, but then Good Morning America broadcast a piece about it. Then Oprah did the same. Soon it was drawing a community not only of thousands of donor-conceived children but of the donors themselves. The Donor Sibling Registry was created before Facebook made it simpler for lost friends and relatives to find each other, before LinkedIn allowed us to peer into each other’s resumes with ease, before smartphones made it easy for us to track down a million pieces of information (and to freely give ourselves up to being tracked) while walking to a coffee shop. A decade later, Kramer’s radical experiment seems more like part of the accepted fabric of our modern, private-made-public experience.

In December, Kramer and Naomi Cahn, a family law professor who teaches at the George Washington University Law School, will release a very compelling book – Finding Our Families — about what they have learned about donor families since the Donor Sibling Registry was launched and how that combined knowledge can be used by, as they put it, “donor-conceived people and their families.” And they show throughout how fertility medicine and the family dynamics created by it are still attended with a lot of misunderstanding, secrecy and shame. There are comments throughout from children, parents, and donors. The audience is primarily the families in the title, but the book offers a wide variety of ideas for journalists, too. Below are lessons I drew from the book, and in a subesquent post I will write about some ideas that Kramer and Cahn offer for changing the way fertility medicine is managed. Some of those ideas would still qualify as radical.

Respect self-identification. Within the first few pages, Kramer and Cahn describe how tricky it is even to write about sperm and egg donation. When someone adopts a child in 2013, they almost certainly never refer to them as their “adopted son” or “adopted daughter,” terms that were more common decades ago. They become family, often even before any legal papers are signed. Similarly, children who are born because of egg or sperm donation don’t necessarily want to be labeled “donor children.” Or, conversely, they may want to make clear distinctions about the parents who raised them versus the person whose chromosomes they share. Kramer and Cahn write:

Chuck, whose parents used donor sperm, explains: “The one term I have a great deal of trouble with is ‘donor’. This man did not ‘donate’ anything. He sold his sperm. ‘Donation’ means giving something to someone for a good cause or the act of giving to a charity. I do not have a donor. I have a biological father.”

Help children trace their health history. I did this for a story in the Los Angeles Times, and it was one of the most difficult stories I have ever reported. I tracked down an egg donor to report on how a pair of fathers and a surrogate mother had given birth to a child with a severe genetic disorder, the kind that is not routinely tested for in donor screenings. These are compelling stories and there are many more of them out there. Cahn and Kramer quote a mother named Rebecca who traced a genetic disorder through her son’s donor.

I found my son’s donor in 2008 and discovered that he suffered an aortic dissection in 2007 and nearly died. It turned out to be a genetic defect in the connective tissue of the aortic root. His two brothers and his mother also had the same problem. When my son was checked, he also had the same heart defect. His open-heart surgery to correct the problem was in June of 2010. Thanks to the [Donor Sibling Registry], I was also able to alert the parents of the five known half sibs. I was also able to find the two other clinics where the donor donated and alert them.

Don’t expect tracking down donors to be easy. You may have to make use of birth certificate records, death certificate records, social media pages, and gumshoe. Kramer and Cahn write about a woman named Kathleen looking for her sperm donor. Kathleen knew two things about her donor: he had been a Baylor Medical School student and he likely had blond hair.

In 2006, she went to Baylor’s med school library and pored over yearbooks from 1979 to 1984. In the beginning, she was naïve enough to think he’d jump right out. She paid close attention to eyes and smiles. She photocopied the pages and asked friends to flip through them and star the best candidates. Before she knew it, she had come up with a list of six hundred candidates, whom she alphabetized and stuck into binders. She sent letters to all six hundred of them and received responses from almost half.

She has yet to find her donor, but don’t let that discourage you from reading this book and from using it to spark your own journeys into writing about donation.