Neo-eugenics or ‘new eugenics’ is the term given to modern medicine’s rapidly evolving biotechnological ability to identify and terminate a raft of congenital variations at increasingly early stages of fetal development.
On June 30th, OII published an abstract originating from Lille University in France. The paper, published in the Journal of Pediatric Urology – http://www.jpurol.com/article/S1477-5131%2810%2900200-7/abstract – and titled Disorders of Sexual Development Prenatal Diagnosis. 10 Year Experience of the Lille University Hospital Multidisciplinary Prenatal Diagnosis Center, rang alarm bells.
What, we asked ourselves, was the purpose of these trials if not to provide physicians and parents with information leading to the termination of a pregnancy?
Our fears were intensified with the discovery of a paper issued by New Zealand’s Liggins Institute.
Aneuploidy is the term used where something other than the standard compliment of two chromosomes is present in a human cell. Down syndrome is most commonly caused by aneuploidy due to a repeat of Chromosome 21. Aneuploidy also describes Klinefelter syndrome (KS), with its XXY pattern of chromosomes. Turner syndrome (X0) women – they are always women – lack a sex chromosome. Nonetheless the majority of X0 women are perfectly functional human beings and, with the exception of being almost always infertile, most manage to live equally functional and contributing lives.
Much the same observation can be made for XXY people, with or without Klinefelter syndrome (KS). Despite the presence of a Y chromosome, XXY individuals are not universally male, though most are – http://aleuromancy.net/upfish/1149895.pdf.
OII has a significant number of members with this aneuploidy. Some are husbands and fathers. Some are just husbands. Others may also identify as female, transgender or even as both male and female (two-spirit) at one and the same time. But regardless of identification, our XXY members contribute to their respective communities. Many are involved in voluntary organizations whilst also holding down regular jobs in a variety of fields.
Bearing in mind that it is a teaching resource for high school biology students, the Liggins Institute’s paper is deeply disturbing. Both X0 (Turner) and XXY (KS) are placed in the same category as Down syndrome by virtue of aneuploidy. This infers that all aneuploidy should be treated equally. Down syndrome is used as an exemplar. Other than infertility in Turner women, no rational has been advanced for why X0 or XXY are thought to require prenatal screening as (sic) “serious chromosomal disorders.”
The potential extent of neo-eugenics becomes more obvious when even the innocuous Jacob syndrome – the much-maligned XYY men featured in a 1970s television series of the same name – are not immune. Only human beings who fall within medicine’s somewhat nebulous boundary for ‘normal’ are safe.
According to one anti-abortion organization – http://www.life.org.nz/abortion/abortionethicalkyissues/foetalabnormality/:
A Danish study found that one-third of babies who were diagnosed as chromosomally abnormal with Turners syndrome, and not aborted, turned out to be normal.
Unfortunately the source of this claim is not acknowledged. But it fits with OII’s experience and it helps demonstrate that simple diversity – in this case aneuploidy – rather than social functionality, is the trigger for abortion.
Imperial College researcher Armand Marie Leroi – http://www.futurepundit.com/archives/006310.html – observes:
…as advances in genetic research leads to the identification and easy testing for a much larger number of defects and features this will change popular views on selective abortion. As more people can see a personal benefit (getting children closer to your ideal) from selective abortion more will decide it is not such a bad thing after all…. It is just that when people see a personal benefit from a choice they tend to look at that choice in a different light.
And New Zealand historian, Hilary Stace, in the on-line article Gene Dreaming: New Zealanders and Eugenics – http://phanza.org.nz/content/gene-dreaming-new-zealanders-and-eugenics – puts a similar case when she writes:
What is the purpose of amniocentesis and other prenatal tests offered routinely to pregnant women, but to abort the fetus if it proves to be ‘abnormal’? This is a eugenic decision. Recent controversy in New Zealand surrounds free prenatal testing and whether easier access to tests will encourage more terminations. In these times of limited resources for health care and education it is a brave parent who decides to continue a pregnancy with a known fetal abnormality.
According to Peter Stone – http://tvnz.co.nz/health-news/screening-way-down-syndrome-babies-3118870 – professor of maternal fetal medicine at Auckland University:
…eventually [pre-natal] screening could provide a platform to assess the ‘health’ of the pregnancy and the baby early on, by including not only Down syndrome but other conditions that could place the woman at higher risk of pre-eclampsia or fetal growth restriction.
During the mid-1990s, New Zealand flirted with the concept of a national prenatal screening program. A pilot study culminated in a report – http://www.nsu.govt.nz/files/ANNB/assessment-antenatal-screening-down-syndrome.pdf – to the Minister of Health in 1996.
Whilst ostensibly aimed at Down Syndrome, there was clear evidence that the program could and would detect other variations in human biology.
… the testing used to identify Down syndrome also detects other chromosomal abnormalities. However the efficacy of the tests in the literature relate to Down syndrome only… women need to be accurately informed about what information can or will be given to them following screening tests.
As a consequence The New Zealand Down Syndrome Association (NZDSA) requested that the aforementioned Professor Peter Stone:
… include in his report that the NZDSA would prefer that in the future screening is no longer referred to as Screening for Down syndrome but rather Screening for Chromosomal Abnormalities.
(See p16, para 3.13.)
The inference was that screening for other perceived ‘abnormalities’ was already occurring. The NZDSA was merely requesting transparency.
Genetics in Family Medicine: The Australian Handbook for General Practitioners, is published by the Australian Federal Government. This handbook is available online and is a little more forthcoming with information on what it refers to as ‘chromosomal conditions.’ Aneuploidy and mosaicism are, at least separated from Down Syndrome. Nonetheless it is clear that both Turner and Klinefelter syndrome are included in an array of prenatal screening routinely offered to pregnant women who are deemed to be in the ‘high risk’ categories for these variations – http://www.nhmrc.gov.au/your_health/egenetics/practitioners/gems.htm.
The extensive over-medicalization of these two forms of biological diversity can be seen in the perceived clinical features and management issues associated with them. Even the possibility that Klinefelter males may be above average height registers as a medical issue. See table 2 – http://www.nhmrc.gov.au/_files_nhmrc/file/your_health/egenetics/practioners/gems/sections/07%20-%20Chromosomal%20conditions%20WEB.pdf.
It is difficult to find anything about these so-called ‘clinical features’ that might not be routinely found in any sample of the general population.
In June 2010 we learned through the media of an American experiment involving pregnant women who were thought to be ‘at risk’ of giving birth to Congenital Adrenal Hyperplasia (CAH) affected daughters – http://www.time.com/time/health/article/0,8599,1996453,00.html and http://fetaldex.org/home.html.
This experiment involved the use of dexamethasone (dex), a steroid which paediatric endocrinologist, Dr Maria New of Mount Sinai Medical Center, believed could both lessen the effects of increased adrenaline on female fetuses with CAH, and also influence sexual orientation. CAH-affected women have statistically higher rates of same-sex attraction – though the issue is moot, as they may also have both a male sex and gender identity as adults!
Dex does not ‘cure’ CAH. Therefore the purpose of New’s experiment was not to provide a remedy. It was palliative and its intention seems obvious enough – an attempt to make a developing fetus more acceptable to parents by manipulating both the development of its sex organs and its adult sexuality. In other words the chemicals were being trialled to find out if they would perform the task currently reserved for non-consensual cosmetic genital surgery and intensive gender role conditioning. OII joined with several bioethicists – http://fetaldex.org/letter_bioethics.html – in condemning the experiment.
There is no ‘cure’ for CAH. Anybody born with it will require some degree of clinical management for the whole of their lives, mainly to balance their adrenal levels. This applies to both male and female CAH patients and can be compared to the insulin-balancing required for individuals born with type 1 diabetes.
It is an important point because the non-consensual early surgical interventions medicine practices on CAH infants are not intended to remedy adrenal fluctuations. Instead they are an attempt to normalize a female reproductive function and control the social development of CAH babies with an XX karyotype.
Just as medical myth has it that all XXY (KS) infants are essentially male, so too are all XX infants with CAH held to be essentially female. The focus on reproductive function also extends to individuals with Klinefelter Syndrome where a regime of testosterone administration is routinely dished up at puberty and beyond in an attempt to masculinize KS youth and ‘normalize’ a male reproductive function.
The benefits from these practices are more imagined than real. One Swedish study – http://humrep.oxfordjournals.org/cgi/content/full/23/7/1607 – of 62 adult women with CAH concluded that:
… of 62 women with CAH, only 14 women had given birth to 25 children compared with [the] 54 children born to 41 age-matched control women.
Testosterone administration to KS individuals is also of little benefit, a statement that should also be applied to the negative clinical stereotyping portrayed in most studies, including this one – http://www.eje-online.org/cgi/content/full/160/3/465.
Even before the Intersex Society of North America (ISNA) morphed itself into the Accord Alliance and betrayed every intersex person gathered around its standard by negotiating the Chicago Consensus – https://oii.org.au/10103/oped-conspiracy-deceit-alice-dreger-isna-invention-dsd-dix-poppas-cornell-cuts-intersex-babies-clitorises/, other intersex groups, including OII, were coalescing around the issue of intersex over-medicalization. Most, if not all, mounted opposition to non-consensual cosmetic genital surgeries – performed with the intention of creating an identity congruent with the reconstructed genitalia – the post-natal administration of a raft of chemical compounds administered, often experimentally, to try and normalize intersex bodies and, perhaps the worst outrage of them all, to the regime of lies and deceptions that had became part of conventional medical wisdom in the wake of John Money’s deceptions regarding the outcome of the David Reimer case – http://www.hawaii.edu/PCSS/biblio/articles/1961to1999/1997-sex-reassignment.html.
Pediatricians, psychologists, ethicists and a plethora of other self-proclaimed stake-holders have routinely dismissed the more recent opposition by pointing to the Chicago Consensus and arguing that its protocols were negotiated between alleged intersex representatives and health professionals. But recently there have been signs of a sea change in some jurisdictions outside of the USA – http://intersex-nz.blogspot.com/2009/11/intersex-surgery-beginning-of-end.html and http://www.nzherald.co.nz/science/news/article.cfm?c_id=82&objectid=10598217.
Unfortunately the rise and rise of neo-eugenics suggests that the convoluted fight to prevent non-consensual cosmetic genital surgery may be slowly resolving into a Pyrrhic victory, with the surgeries only being discarded because biotechnologists and health professionals are discovering new ways to rid humanity of intersex bodies.
Whilst the fight to end non-consensual intersex genital surgery must continue, organizations and individuals will need to find other ways to defeat the neo-eugenicists. Intersex and other biologically diverse peoples’ participation in research can and should be reconsidered. Individuals who give their time to fill in forms and questionnaires or occasionally either allow MRI scans or donate body samples, in the belief that they are aiding science, need to start asking researchers and giving thoughtful consideration themselves, to exactly what the information they are providing can potentially be used for.
More often than not the results of the research that intersex people participate in are locked away behind pay-walls on the Internet or published in professional journals, both relatively inaccessible to the participants. Where participation is given, a demand for open access to these papers would be a small price for the biologically diverse to expect in return for making themselves available. It would also ensure a degree of transparency that is virtually nonexistent at the moment.
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