Tuesday, February 17, 2009

Record Keeping - A Supposition

Normally I try and keep suppositions and conjecture out of this blog, however, recent conversations with politicians who were enquiring in regard to the record keeping of the time here in South Australia has led me to the point where we have to suppose what the intent was.

What do we know as fact? That record keeping and making in the early seventies in the hospitals were excellent. Everything that could be recorded was recorded and the records were kept. This is clinical best practice that allows for medicine to be practiced with the greatest care on the day and also in the future as we are to track down causation and effect events to improve subsequent treatment. An example of this is the post-natal treatment records for most children and mothers of the day which are large enough to fill their own small book. In regard to donor conception records, the only documents that have been provided are those contained on small pieces of paper with a paucity of information and the volume of which wouldn’t even be enough to fill up your back pocket.

What we don’t know. Are these poor DC treatment records the only records in existence? The clinics and practitioners of the time have been constantly changing their story in regard to these records, they were destroyed, they are lost, records weren’t kept or we do not have anything to link the treatment records to the donor records. Numerous doctors that I have spoken to who have been involved in the hospitals at the time find it hard to believe that either poor records were kept or that they have been destroyed as it does not follow the practice of the day. For argument’s sake we will assume that the clinics are being honest to an extent and that these small pieces of paper are the only records that have ever existed (provided that they haven’t been destroyed or lost) and that they are unable to link these to any donor records that may or may not exist. Why would the clinic go strictly against best clinical practices in not creating and keeping appropriate detailed records? It goes directly against everything doctors and nurses are taught from day one of their training.

While these clinics were operating in a hospital environment and in a clinical setting, the early seventies represent donor conception in its infancy here in SA and we could perhaps assume that they were operating more as a research facility undertaking experiments in medical and social science. As a scientist myself, I know for a fact that any research that is conducted now and in the past must be appropriately documented so that experiments can be verified and repeated as required. So what we have is a scenario in which the documentation that was being made within donor conception falling outside the accepted norm within either the medical or scientific fields. For something that was so important and supposedly ground breaking it is mind boggling to think that inappropriate documentation occurred.

If these practitioners and clinics were so lazy as to not create appropriate documentation then it is difficult to see how they could have gotten into those positions in the first place or how they were then able to carry on in the field for such a long time thereafter all the while receiving accolades after accolades. This is where we fall into the realm of conjecture. If we do not wish to follow the practices of the day and do not want to be able to go back over what was done, how, when and why to improve things in the future, we either have to be completely incompetent or we have to be hiding something. As mentioned previously, these practitioners and clinics either already were or they went on to be very successful, so they are definitely not incompetent. Is it possible to assume that it was intentionally done, to reinforce anonymity? That if there are incomplete or poor records then there is no way that the identity of the donor/vendor can ever be found out. And if they were worried about anonymity then they knew that it may become an issue for offspring in the future who would then seek out this information.

Monday, February 02, 2009

Whose Your Daddy? - a rebuttal.

The following post is a rebuttal and letter to the author Cheryl Miller in regard to her article:
Whose Your Daddy?

It has subsequently been published by ReasonOnline here.

I am certainly not against anyone having differing views to myself. After all that is what society is all about. However, when the whole premise of the arguement is based on error riddled information the value of such a perspective is lost. And unfortunately for those who do not know any better they would believe that the premise is based on fact, which it is not, and is a shame.

Dear Cheryl

The following letter contains factual information that is contrary to the erroneous claims made by yourself in your article “Whose Your Daddy?”

While many adult donor-conceived people are upset at the lack of forethought given to their emotions and thoughts on the issue in regard to the subject matter, the purpose of this letter is not to delve into these issues which some people may classify as debatable, but to correct the erroneous claims in a scholarly manner.

“In Europe and Australia, national governments created mandatory, centralized registries that activists succeeded in opening to the public, eliminating the possibility of anonymous donation. The result: Donors ceased to come forward in adequate numbers, and the waiting lists for sperm and ova have grown very long.”

Clinics will often parade these lines out in a scaremongering propaganda campaign to garner sympathy and to attract more donors but it is rarely based on fact. Numbers of donors for the vast majority of places around the world had been dropping for many years prior to any suggestion of the removal of anonymity and the creation of any registry. This is not a new phenomenon, however, the clinics would like us to believe that this is the case. A prime example is South Australia which is one of the only places in the world to actually have legislation that guarantees anonymity. This legislation was initially enacted in 1988, yet the numbers of donors have steadily decreased. This is the exact antithesis of your claim. If your claim as the removal of anonymity as being the major source of donor shortage then surely South Australia would have more than enough donors. Victoria, another state in Australia which has the most progressive legislation in the world on donor conception had an increase in donors the year after they banned anonymous donations and set-up a centralized register. Two clinics in the UK since starting an active recruitment campaign shortened their waiting period effectively to zero (an increase in donor numbers). The others that complained of shortages never took part in active recruitment. In New Zealand, their donor numbers also increased after anonymous donations were voluntarily withdrawn by the NZ clinics.
As you can see there are numerous examples that show that removal of anonymity and the establishment of registers does not necessarily equate to a reduction in donor numbers.
The reduction of donor numbers can equally be explained by the attitudes of men in that time as opposed to any restrictions placed on them.

“Since 1995 offspring have been able to find siblings through the U.K. DonorLink, a voluntary registry funded by the Department of Health.”

UK DonorLink was not in operation in 1995, it only came online in 2004.

“A recent U.K. government report found that the number of insemination treatments fell by about 30 percent in 2006, despite a small increase in sperm donors.”

The number of donor insemination treatments fell so drastically for couples due to the prominence of ICSI treatment. The lack of available donor samples is currently due to the newer trend of single-mothers-by-choice and lesbian groups.

“Many Europeans thought that by mandating a registry and banning donor anonymity they had solved the problem of offspring not having information about their biological parents. They soon found, though, that parents were getting around the ban by simply not telling their children about the circumstances of their conception.”

This is not new. This was THE practice for the majority of donor conception practices around the world until only recently. It has always been a practice that has been shrouded in secrecy and deception, patients were actively counselled not to tell the children.

“The program, started in 1983 by The Sperm Bank of California (TSBC), releases a donor’s identity to his offspring when the child turns 18. Scheib, along with the sperm bank staff, expected that most offspring would want to meet their donors, but few of the eligible offspring have chosen to.”

That would be obvious as the vast majority do not even know that they are even donor conceived. Your own article even states that in Sweden only 10% of offspring were told. Here in Australia a study showed that only 30% intended to tell – fewer ever do. A study by Golombok (1996) undertaken in the UK, Netherlands, Spain and Italy of 111 families using ART, 75% said they had no plans on telling. In New Zealand, 30% had told of 181 parents (Adair 1999), although many more said they intended to tell. In the UK 39% had or intended to tell while 61% did not. (Lycett 2005). In another study 85% of DI parents and 69% of OD parents, there was the belief that there was no need for the child to know (Murray 2000.) So the trend is definately not to inform the children and therefore it makes it difficult to seek answers to questions that you do not know exist. This paragraph of your article is misleading as it makes the assumption that the majority of offspring do not want identifying information. It is completely false as the research conducted by Mahlstedt et al to be published in Sterility and Fertility (accepted) shows that 87% of adult donor offspring wish to know the identity of their father, while 62% wanted to at least meet him once and 26% wanted to establish a relationship with him. So for the vast majority, paternal kinship is a very vital and important component of their lives that cannot be ameliorated by a simple medical file.
Your article leads the reader on a journey whereby the conclusion that infertile couples are being denied the chance to procure a child through a financial transaction is being hampered by the rights and desires of the offspring already created in this manner. Yet the data that you have used to support this claim, that of donor numbers dropping due to the removal of anonymity and the creation of registers (which for the vast majority there are no centralized registers accessible to offspring as yet, unless you are a Great Britain or Victorian and then only if you are born after a certain date) is not supported in fact. This claim is misleading and erroneous at best.

edited post: Someone asked about the study conducted in Australia, it apparently was conducted in the 80's at Prince Henry's Hospital treatment centre which then became Monash IVF. As I have been unable to locate it online as evidence I have included other studies that can be traced as further evidence of the trend not to tell all around the world.