By admin on December 23, 2013

The media, and the “experts” need to stop using the “30,000-60,000 per-year” numbers.

In 1988 the Office of Technology Assessment estimated that 30,000 children were born via donor insemination during the year 1986/87 in the US (1).
More than a quarter of a century later- and with no further research or system for record keeping, ‘30,000 annual births’ is still trotted out in academia, lectures and the media (2). Sometimes the number is doubled, probably to allow for the passage of time, and occasionally a range of 30,000 – 60,000 is deployed.

Yet so much about donor insemination has changed during this time. Using either of the whole figures is scientifically unjustifiable, and the range is just as flawed.
The media, and the reproductive industry’s “experts” should not be using such patently erroneous figures. Rather, they should be noting that there is no reliable method of assessing how many children are conceived gamete donation each year. (Yes, this is also true for the egg donation industry as well- more than 40% of surveyed egg donor parents were never asked to report their live births.) (3) They should be pointing out that the USA has no accurate tracking or record keeping from which it is possible to make an educated assessment. They should not be perpetuating the idea that some entity, somewhere, actually has the ability or the desire to collect and keep these types of records.

Instead of complacently relying on outdated best guesstimate figures from more than a generation ago, they should be demanding reliable, recent figures. They should be voicing outrage that neither the fertility industry nor any other entity is required to collect data or report statistics on the numbers of human beings conceived using donor sperm. Interestingly, this is in stark contrast with cattle insemination, which is much more tightly regulated and surveyed.

The donor insemination landscape has changed significantly from the 1988 report. In 1986 almost all recipients were married; nowadays, married recipients (excluding lesbian couples) make up a small minority. Whereas in 1986 the majority of donors were recruited directly by fertility doctors, most donors are now sperm bank recruits.

The number of sperm banks has rapidly increased since the 1980’s, as has the number of donors. But the greatest change of all is the opportunity for kinship acquaintance. In 1988 it was essentially fantasy for donors or offspring to think they would get to know one another. Now, in the generation following the advent of the Donor Sibling Registry (DSR), such knowledge is almost an expectation. Only one thing remains the same: the general lack of oversight and regulation, resulting in a dearth of record keeping.

Over the last thirteen and a half years, the DSR has collated the most comprehensive records that currently exist in the USA. It has records of 41,000 people- including over 2000 donors, information about tens of thousands of offspring, and details of hundreds of US sperm distribution facilities. However, these records are very incomplete, as all have been obtained via voluntary registration.

For several years, the DSR has been applying pressure to sperm banks for them to maintain their own records, but progress in that direction is slow. And even if individual sperm banks did create proper records, in order for them to be accurate and reliable the system would need to be mandatory, not voluntary. Records would need to be collated and integrated with the records of every agency that trades sperm. This would require that the whole industry be accountable to one body and that reporting of births also be mandatory.
This is a call to those quoting that one-time estimate of 30,000, and to those concerned about the pitiful lack of
 oversight and accountability within the US sperm donor industry, to speak up about the lack of reliable information within the public domain. We need to demand that federal money be allocated to research and regulate this industry, and to do it in a thorough and comprehensive manner.

In the meantime, everyone using these figures should acknowledge that they are 27 years out of date, and even then they were only rough guesstimates.

(A version of this document appeared in BioNews issue 655, May 2012.)
Office of Technology Assessment, 1988
NY Times, November 2011
Reproductive BioMedicine Online, 2012

By admin on December 15, 2013
Over the past decade there have been a couple of Donor Sibling Registry “copycat” sites. These sites offer some of the same capabilities that the DSR has offered.  Recently I have seen some new ones cropping up.

There are repercussions of creating these new small “registries”. Most urgently, they dilute what has been a single focused searching capability. I hear all the time from adopted people who wish that they too had only one source to search at. The more “registries” the less likely people are to find one another. When pressed on this, these copycat sites responded with messages like “the more the merrier.” These people haven’t a clue.

Bill Cordray, one of the most outspoken donor conceived people in the US, had this to say: “I think it is a bad idea to undermine the reputation of Wendy’s work by setting up a competitive registry. Although it’s a free Internet and you can do what you want, it will just weaken the value of DSR if several similar registries are set up and you’d have to go to all of them to do any cross-checking. As far as the fee goes, it is more than reasonable.”

Creating more “registries” only does a disservice to donor families around the world. If the focus is taken off of us, it makes it harder for people to know where to post themselves so that they have the best chances for being found. Ultimately, people will not have the chance to connect that they have now, through the DSR. If you post on a copycat site, you may never know that your matches have been sitting on the DSR all along.  I am frequently on several of these sites having to tell people that their matches are already posted on the DSR. (A lot more work for me!)  And if you lurk on the DSR without posting, you’ll never know how many of your matches are also lurking, also waiting for someone with their donor number to post first.

These new sites boast that they are free. Well, it’s easy to be free while you have a few dozen members, or even a few hundred. We were also free for the first five years of operation, as I ran and built the site with my own money and a few small donations. When we hit more than 7000 members, it became clear that I would need help from members to continue growing our charity organization, as we received no outside funding. The website is still completely free for browsing, and the $75/year or $175/permanent membership fees are only for people wanting to post their information or make contact.  With more than 41,300 total members (children, parents, egg and sperm donors, adult donor conceived people and “others”), and more than 10,700 people matched- your odds are pretty good for matching on the DSR.