Thoughts of donor conception practices from a donor offspring whose views changed dramatically once he had children of his own. This event has lead me on a quest to find my true identity, heritage, family health history and genetic relations (both donor and siblings), for myself and for my children.
Monday, March 14, 2011
Australia leads the way, but......
I had a commentary on the Aussie Senate report published in Bionews.
Unfortunately their edits changed a few of the sentence meanings.
You can read the Bionews article here:
but my unedited version is included below:
Australia Leads The Way; But Does It Fall Over At The Last Hurdle?
On Thursday 10th January 2011, the Australian Senate’s Legal and Constitutional Affairs Committee tabled its report in Parliament on its inquiry into donor conception practices in Australia.
This was a landmark moment as it represented the largest and most comprehensive review in the world of the practice. The inquiry received submissions from all stake-holders (recipient families, offspring, donors, clinics, counsellors, legal bodies) as well as from individuals in the general community and special interest groups. The report made 32 recommendations to which a further report must be made in 2 years to ascertain progress.
One of the main reasons why an inquiry was held and also the same reason why the Federal Government may have difficulty in implementing such recommendations is that fact that constitutionally, the area of health has always been an area managed by the states. The patchwork of legislation across the states dealing with donor conception and assisted reproductive technologies meant that people around the country were being treated differently and afforded conflicting rights dependent on what state they were either conceived in or were receiving treatment in. This is irrespective of the fact that clinics operating in Australia must all follow the guidelines set out by the National Health and Medical Research Council for accreditation under the Reproductive Technology Accreditation Council that operates under the auspices of the Fertility Society of Australia. The recommendation that all states enact legislation and that all legislation be consistent is therefore welcomed. How this is yet to be achieved is one which the Senate does not readily have an answer as it declares that it will “pursue all available policy and political options” to achieve this. Given that the Federal Government was able to use its external affairs powers to enact the “Prohibition of Human Cloning for Reproduction Act 2002”, the move is not without precedence.
The recommendations are clearly focused on the wellbeing of offspring while also giving greater protection to recipients and donors who would also have greater access to information and counselling, as well as access to an ombudsman-like complaint process. A moratorium on record destruction as well as ensuring record preservation, not only provides the ability to match offspring with their progenitors and siblings, but also ensures good scientific practice that will allow medical research to be able to correlate a condition with source material or procedures. Both factors are severely disadvantaged under the various state prescribed medical record keeping practices which allow for destruction of these records even before the offspring has reached adulthood.
The reduction in the number of families able to use the single donor is a positive step to reduce the possibility of a consanguineous event. While supply is currently not able to meet demands and will be further diminished, the welfare of the child should never be held to ransom by market forces and is a correct decision. While mathematically the chances are small, in some Australian major cities where there are populations of not much more than a million people and everyone appears to be only separated by two degrees of separation, the mathematical models appear to fail at capturing the heightened risks.
The ability for parents to actively deceive their children about their origins as occurs in the majority of instances (Golombok et al. 2002, Lycett et al. 2005), has been reduced by the recommendation that birth certificates be annotated, thereby allowing the child to discover their conception status upon turning 18. However, it is hoped that the recipient family would inform their child well before this date in line with current best practice (Johnson and Kane 2007) to avoid the identity deconstruction which occurs with late discovery and the trauma that it creates (McWhinnie 2000).
The banning of payments to donors to maintain the altruistic paradigm of donating is somewhat perplexing when reimbursements are allowed to continue. Evidence presented by the clinics at the inquiry of approximately a hundred dollars for sperm donation re-imbursements can clearly be seen as inducement to “donate” when it is easy for a man to accumulate a few thousand dollars. A rose by any other name would perhaps have the term “re-imbursement” relabelled “payment”. It also does not follow the practice of blood donation in Australia which is completely without financial transaction and is more time consuming and invasive than sperm donation.
It was recommended that a centralised donor conception register be formed that would also implement a DNA database to assist those whose records have already been destroyed. It is imagined that this register and database would be comparable to the UK DonorLink register as it was referenced by the committee. Access to identifying information on this register would be voluntary and it was recommended that it would not be mandatory, nor retrospective. While the committee states that:
“In principle, the committee is also supportive of donor conceived individuals having a right to information about their biological heritage. The committee urges the states and territories to further consider the issue of retrospectivity in the creation of any national register.”
It is on one hand acknowledging the rights of offspring to know their kinship but also extinguishing it if the offspring was conceived before a certain date. The let out clause of states investigating retrospectivity is just that, as some of the states have investigated it previously and rejected the notion and are unlikely to veer from the status quo. With legal arguments of discrimination based on age and conception in addition to precedence of adoption retrospectivity (even though not entirely universal in Australia) and that of courts overturning privacy under child welfare principles, the government leaves itself open to a High Court challenge such as Pratten v British Columbia (Canada), which is still in progress.
The landmark inquiry recommendations are a huge step forward for the welfare of people conceived via donated gametes and embryos in Australia and which would hopefully be mirrored in other jurisdictions around the world. Sadly it falls at the final hurdle in giving existing offspring parity with every other citizen in Australia, keeping their kinship, identity and medical welfare in limbo.
Golombok, S., F. MacCallum, E. Goodman, and M Rutter. 2002. Families with children conceived by donor insemination: a follow-up at age twelve. Child Development 73: 952-68.
Johnson. L., and H. Kane. 2007. Regulation of donor conception and the "time to tell" campaign. Journal of Law and Medicine 15(1): 117-27.
Lycett, E., K. Daniels, R. Curson, and S. Golombok. 2005. School-aged children of donor insemination: a study of parents’ disclosure patterns. Human Reproduction 20: 810–9.
McWhinnie, A. 2000. Families from assisted conception: ethical and psychological issues. Human Fertility (Cambridge) 3(1): 13-9.
Pratten v. British Columbia (A.G.) and College of Physicians and Surgeons of B.C.
Supreme Court of British Columbia hearing dates:October 25 to November 5, 2010.