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Unnatural selection

14 December 2009
By Helen Keeler
Writer and actress
Appeared in BioNews 538
I had wanted to donate my eggs to a woman with fertility problems ever since having children of my own. I frequently tell my three children that I always wanted to be a mother and that every day they make my dreams come true. How wonderful it would be to help make someone else's dreams come true too.

Earlier this year, I approached the four hospitals offering fertility treatment within a 40 mile radius of where I live, explaining my family history. Three of them rejected me immediately. The fourth hospital invited me to attend an appointment with a counsellor, who recommended I be accepted. I was given another appointment to have the necessary extensive blood tests; the results were all fine. At a third appointment, I met a doctor who told me she had a couple in mind to match me with. Shortly after this, I received an email telling me the hospital had now decided they could no longer use my eggs.

There was one reason for all these rejections: my eleven-year-old daughter has Asperger syndrome (AS). She experiences difficulties with communication, social interaction and coordination. In addition, she suffers from panic attacks and her anxiety is at times debilitating. She's also a warm-hearted, thoughtful person and a gifted mathematician; in fact, she achieves above age expectancy in every academic area. Her sense of humour and understanding of language are developing apace; when I told her I'd been rejected as an egg donor, she asked me with a wry smile if that meant she was a bad egg. Only one other relation has an autism diagnosis, a young adult with AS in my extended family who is studying for a degree and holding down a job.

My experience has prompted me to think about this issue in many ways. A starting point is that it's ironic that inclusion and acceptance of people with disabilities has reached the point where there is legislation to protect their rights, while simultaneously doctors are trying to prevent them from being born. Disabled people are, in many cases, capable of great achievements. Should we be using perceived disability to tip the balance against them in fertility treatment? It is human nature to play to our strengths. This is not just something that high-achieving disabled people do, it is something we all do. Recently someone said to me, 'Is there no end to your talents?' I thought, now there's a person who hasn't heard me sing. Like everyone, I have many failings; I choose not to showcase them. Possible disadvantages cannot be weighed against potential talents when contemplating the impact of disability in this abstract way.

While it could be said that prospective recipients of donor eggs would be unlikely to accept them from someone with AS in their family history, I don't think this justifies not offering the choice. This was perhaps the aspect of my experience that caused me the most frustration and sadness. It would be unthinkable for a doctor to tell me that I was not allowed to conceive naturally due to my family history of AS, so why is it acceptable for doctors to make this decision on behalf of those who need assistance conceiving? There is an acute shortage of altruistic egg donors; in rejecting me the message is that it is better to be childless than to have a child with AS. I would disagree most ardently with this premise.

The fact that scientific progress has led to this situation means that an ethical and philosophical debate is necessary. Do we really know what's best? In millions of years of evolution, AS has not been eradicated. While some might say there are greater numbers of people now with AS than ever before because of improved understanding and diagnosis - a theory that I would not necessarily dispute - it could also be said that we have evolved as a species to have an increasing number of people with AS. In other words, people with AS have been naturally selected, so maybe we need them in our species in a way we are yet to fully comprehend.

The concept of neurodiversity asserts that atypical ways of thinking are simply at a different point on the same scale as the majority of people. This implies that AS is an extreme version of normal. When my daughter struggles, she does so considerably, however when she flies, she soars. I wonder if it is either possible or desirable to breed out these extreme states from our species.

The bottom line is that both human beings and AS are too complex for this to be a straightforward choice between whether it is better for a person to be born who has AS or another person to be born who hasn't.

21 December 2009 - by Fenno Outen 
Useful research in mental health care has historically been in short supply. Whether the issue is accurate diagnosis of problems, understanding their causes or the delivery of reliable treatment, there remains plenty of room for progress. For example, it is common for clinicians to disagree about diagnoses or for them to be changed on a regular basis. Furthermore a diagnosis provides a relatively poor guide to effective treatment....
7 December 2009 - by Dr Aarathi Prasad 
Session 3 of the Progress Educational Trust's annual conference (PET), held on Wednesday 18 November 2009 at Clifford Chance, was chaired by Professor Dian Donnai,Professor of Medical Genetics at the University of Manchester, and started with a talk by Karen Temple, Professor of Medical Genetics and Honorary Consultant in Clinical Genetics at the University of Southampton and Wessex Clinical Genetics Service. Professor Temple gave an intriguing talk on the influence of parent...
23 November 2009 - by Heidi Colleran 
In the first study of its kind, researchers in the US have identified a genetic variant that appears to influence both a person's ability to empathise, and how they respond to stress. The research, by a team from Oregon State University and the University of California at Berkeley and published in the journal Proceedings of the National Academy of Sciences, may shed significant light on scientists' understanding of autism, which is characterised by problems with empathy and social communicati...
16 November 2009 - by Dr Elisabeth Hill 
Numerous grant funding calls, as well as public and scientific debates are now focusing on the cause of autism spectrum disorder (ASD). While it is important that we search for the cause(s) of the disorder - in order to improve support, education, employment and so on for those on the spectrum - such an approach is problematic for two reasons. First, there is an implicit suggestion that the quest for a cause will be simple and thus achievable. Second, there is a general assumption that there...
25 October 2009 - by Dr Rebecca Robey 
US scientists have identified a genetic trait that is strongly associated with autism. The genetic change does not involve a mutation within the DNA sequence of a gene but instead involves an alteration in the physical structure of the DNA which affects the way a gene is turned on and off. The researchers hope that the new findings will lead to novel ways to diagnose and treat autism....
23 October 2009 - by Sandy Starr 
The Progress Educational Trust (PET) debate 'From Autism to Asperger's: Disentangling the Genetics and Sociology of the Autistic Spectrum' took place in the UK Houses of Parliament on the evening of 20 October 2009, two days before the Autism Bill received its third and final reading in the House of Lords....
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