By admin on January 20, 2021

“The arc of the moral universe is long, but it bends toward justice.”  

                                                                                                    —Martin Luther King, Jr (Quoting Theodore Parker)

"The arc of the [moral] universe may bend toward justice, but it doesn't bend on its own."

                                                                                                    —Barack Obama


2020 marked the Donor Sibling Registry’s 20th anniversary, and we're days away from achieving another milestone: matching 20,000 people with half-siblings and/or biological parents.

I’ve been reflecting on both our successes and our failures in pushing to move the reproductive medicine industry forward in a more ethical and responsible manner, hopefully following an arc of justice.

During the DSR's first few years, we worked tirelessly to convince the sperm banks, egg clinics, reproductive medicine industry, and many parents that disclosing the truth to offspring was necessary and that it should happen early in a child's life. Yet back then, fear and the shame and embarrassment of infertility still overruled honesty in the majority of heterosexual donor families. The industry recommended and benefitted from this silence and shame-based secrecy, and few (e.g., the Infertility Network in Canada) challenged this idea. 

At conferences where we regularly present research that we've published on all stakeholders (egg and sperm donors, parents, donor offspring, donor grandparents, non-bio parents), I've spent countless hours in face-to-face meetings with sperm banks and egg clinics pleading for them to read the research and re-examine their policies. While sperm bank policies haven't changed much, donor families have been evolving. So many more parents understand the importance of early disclosure and a child's right to know about their origins. I now frequently consult with parents who are about to tell their adult children because they just can’t carry the secret any longer, and the guilt over not being honest with their children becomes too much to bear. Even the American Society for Reproductive Medicine (ASRM) has, in recent years, finally begun to advise early disclosure. And, for around a decade, more than two-dozen egg clinics and agencies have been writing the Donor Sibling Registry into their parent/donor agreements, facilitating contact right from pregnancy or birth. That's progress!

Overall though, the arc of justice can seem to move painfully slow or even seem completely stalled. Sometimes, it even appears to take a few steps back. The recent California Cryobank/Northwest Cryobank threat to fine a parent $20,000 for testing her donor child's DNA and for then connecting on a DNA website with her child's donor family certainly feels like a step back. (The parent, in turn, sued the sperm bank and just last month was paid $75,000 by them to settle out of court.)  I have to believe that antics like this are a last-ditch effort to shut the barn door on a horse that got out long ago. I have to believe that in the long run, we'll someday have a reproductive medicine industry that will set policy based on the needs and rights of the very children they're helping to create. I have to believe that someday the reproductive medicine industry will honor a donor child's right to their genetic relatives, ancestry, and family medical history. 

In the early 2000s, we also began to examine and tackle the issue of donor anonymity, long before DNA testing blew anonymity completely out of the water in 2005. The sperm donation industry still misleadingly sells every single vial of sperm as anonymous, be it for 18 years or forever. Not a single sperm bank will facilitate the early connections that we see happening for egg donation families, and most won't honestly acknowledge or properly educate their clients and donors that anonymity is no longer possible. They refuse to tell donors: if you don't want to be found, don't donate.


We’ve also worked very hard to convince the sperm and egg industries, donors, and parents of the importance of honoring a donor child's curiosity about their half-siblings and unknown genetic parents. At first, this idea was novel and many threw up their hands in outrage, proclaiming a donor’s right to anonymity and denying any importance of a genetic connection. Early on, one LGBTQ organization, the Family Equality Council, proclaimed that "DNA doesn't make a family!" and some parents claimed, “Those people are not your family!” (from the parent of one of my son’s 19 half-siblings). We held our ground as we watched match after match, connection after connection on the DSR have a profound impact on donor offspring, parents, donors, and their families' lives as families were redefined, lives were enriched, and the meaning of family was expanded. The DSR has now facilitated 20,000 of these connections. While warming to the idea of half-sibling connections, many parents still insist that the donor is only a contributor of a cell or a piece of genetic material and has no importance or place in their children’s lives. As more donor-conceived people tell their stories publicly, we see this arc clearly leaning toward justice and a donor child’s right to know about their genetic relatives, their ancestry, and their family medical history. 

We’ve waved our arms for years about the industry's lack of accurate record-keeping, their subsequent inability/refusal to limit the number of children born to any single donor (the largest half-sibling group that we know about is now at 216), and the inability/refusal to update and share medical information among families and donors. Sadly, this arc seems to reach far into the future. It would cost money to retain accurate records, to share and update all medical information, and to then limit the number of children for any one donor. We just shouldn't be sacrificing ethics for money. Money can still be made in an ethically run industry.

While we wait for the reproductive medicine industry to catch up to what thousands of donor families have known for decades, we'll keep giving it our all and pushing for the arc to bend a little more and a little faster. Kudos and thanks to all of our Donor Sibling Registry donors, parents, and donor-conceived people who have been brave enough to tell their stories publicly. Each and every story and testimonial bends the arc a little more, toward a more moral, ethical, just, integrous, and accountable donor-conception world, honoring all stakeholders but putting the needs and rights of donor offspring first and foremost. Reproductive justice should most certainly include justice for donor offspring.

By admin on January 04, 2021

Dozens of egg clinics, agencies, and attorneys have been writing the DSR right into their parent-donor agreements for many years, allowing parents and donors to connect right from pregnancy/birth. The program has been extraordinarily successful. Sperm banks could do the same!

Here's the letter we've sent to many egg clinics/agencies over the years:

Hello!

I’d like to introduce you to the Donor Sibling Registry (DSR), a nonprofit organization founded in 2000 that assists individuals who were conceived as a result of sperm, egg or embryo donation, and who are seeking to make mutually desired contact with others with whom they share genetic ties. In addition, we facilitate contact amongst donors and families who wish to be in touch--sometimes long before the children turn 18. In the past 20 years, we have helped to connect almost 20,000 people, and now have more than 72,000 members in 105 countries.
 
 We’re reaching out to people who facilitate the creation of happy families.  We’d like to partner with you.  Here’s why:

• As we move toward increased openness as a society, there’s a particularly strong need to stay at the forefront of the trend within the donor industry.
• 2009 published research (Human Reproduction) on egg donors showed that, while 97% of egg donors have never been contacted by their clinic(s) for medical updates, 31% of egg donors felt they, or close family members, had medical/genetic issues that would be important to share with families.
• Registering on the DSR is the only way to stay anonymous while still sharing medical info.
• It can be of equal medical importance to donors that their offspring provide updated medical information, especially as the donors build their own families.
• In the last few years, there has been a desire for earlier contact between donors and recipient families.
• Many families occasionally wish they could ask their donor simple questions, such as, “My son would like to know if you ever played a musical instrument?” or, “Is there any diabetes in your family?”

The DSR can help by providing a valuable service to your clients and your company-- at no cost to you.  (It’s a win-win-win!)

"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 a facilitator." 
~ Andi, Oregon Reproductive Medicine
 
 What Does A Relationship with The DSR Do for Your Agency/Clinic?
CONTACT: The issue of contact between the donor and the recipient is removed from the hands and focus of the agency/clinic.
CONSENT: Since the DSR relies on mutual consent; the agency/clinic doesn’t need to be worried about protecting anyone’s privacy.
CHOICE: Each party can remain anonymous if they choose, so the decision is ultimately in the hands of those involved. Each party can decide how much information they’re comfortable sharing. 
CURRENT: The sharing and updating of medical records happen on the DSR, so the agency/clinic has less work since they have provided a tool for medical updates.

We invite you to set precedent within the egg donation industry.  The DSR website has many resources to assist you in becoming a leader in fully educating and supporting families through this exciting process. In addition, I am always available for group consults and am happy to come to your office (or video meet) to help get your team up to speed on educating recipients and donors on connecting through the DSR.

 We look forward to working with you!
 
 Sincerely,

 Wendy Kramer
 Co-Founder and Executive Director, the Donor Sibling Registry

“Thank you for EVERYTHING you do that makes it possible for these connections to be forged. We are proud and honored to work with the DSR!
We’re registering every donor who agrees to undertake semi-known and known cycles and since Dr. D. joined San Diego Fertility Center last year, with all his male/male couples throughout Europe – who all want future contact – our registration numbers will keep growing and growing ”  
~Jenna Lake, Egg Donor Program Director at San Diego Fertility Center

"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

"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

"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

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.
~ Kallie Wilson, MSW, Care Coordinator, Egg Donor Solutions


By lmkwp2 on November 04, 2020
Guest Blog: by Lavon Peters



If there’s one thing I’ve learned since becoming a parent, it’s that you can’t control how your children feel — about anything. This is especially true if your child is donor-conceived. You might have firm opinions and feelings about your family situation, but your child’s feelings are their own … and your child’s feelings don’t necessarily mirror yours.

Many parents who used a donor to conceive claim that their child isn’t interested in knowing anything about their donor or possible half-siblings. But this is frequently the parent’s own projection. The parent might be nervous about how they conceived or anxious about their own relationship with their child. Parent often fear what these new family connections might mean, and how those new connections might affect their carefully constructed family unit.

However, parents need to put aside their own insecurities and fears in order to really listen to what their children want and need. All people have an innate desire to know who they are, which includes where — and whom — they come from. Assuming that parents are honest with their children about their donor conception (which is a whole other issue!), at some point those children will express curiosity about their biological parent, medical history, ancestry, and/or other close genetic relatives such as half-siblings.

Parents must also understand that their children’s feelings will change over time. A child’s interest in their donor or half-siblings may increase as they mature — or might decrease as the child seeks to establish their own identity, separate from family.

In addition, not all the children in a family will have the same level of interest in their donor or half-siblings. Even among my own three kids — who have all known about their donor status since birth and have had access to their half-siblings since my oldest was age 5 — there isn’t a consensus regarding their donor or half-siblings. My oldest (21) has had email contact with our donor but hasn’t met him. My youngest (16) has met the donor but otherwise hasn’t been in contact with him. And my middle child (19) has neither met nor been in contact with the donor, although she does belong to a Facebook group that includes the donor. All three of my kids have met various half-siblings, but only my oldest maintains an ongoing relationship with them. I assume this will change as my children also change and grow — and I know it’s my job to support my kids, wherever they are on that path.

That’s the thing about having donor-conceived children — or any children! As parents, we don’t get to decide how they feel. Our job is simply to guide and encourage them in their emotional development. Donor-conceived children need their parents’ support as they navigate their own complicated feelings about how they came to be, and what it means to them as individuals.

If you need guidance in helping your donor-conceived child sort through their feelings, check out the Donor Sibling Registry. Our DSR Counseling page is a great place to start, and our DSR Families and Donor Offspring pages provide additional resources. We’ve also conducted a lot of research on donor offspring; to read about their perspectives, see the DSR Research page.