The Moral Donor Universe: Bending the Arc

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.