There have been a fair few local news stories lately, about the new project here in New Zealand to gather and study the DNA of autistic individuals. The research project is currently actively recruiting people and seeking much-needed monetary donations. (You can find out more about the project and how to register here.)
My initial reaction was a disinterested interest; I found the project interesting at an intellectual level, but I quickly dismissed the idea of involving my own family in the study. After that I largely put the issue out of mind, until one of my Facebook page fans asked whether I was aware of the study and what I thought about it, while she let me know that she personally had concerns.
After that I decided to reach out personally to the researchers, to ask them whether they’d be interested in answering some questions and addressing some concerns, that I could then share on my blog. I haven’t yet received any sort of reply or even acknowledgement of my email – which in itself is fine, they no doubt have floods of emails to work through – but I still want to write this post rather than wait on their possible reply for an unspecified amount of time. (If they reply later in time, I will provide an update.)
Part of the reason I initially dismissed the study in terms of my own family’s involvement, is because we’ve taken part in these sorts of things before, and received only pain without any real benefit (pain of a blood test, waiting on appointment times, etc). The benefits that come from taking part in these sorts of long-term information gathering exercises is often so far in the future as to be of no personal benefit to the person or family contributing, and there is no doubt from what I’ve heard from the researchers themselves, that this is a very long-term project that would take many years to harbour any even potentially useful results. Ultimately it may just be a matter of improved knowledge, that itself does not directly lead to any improvements in interventions.
Of course knowledge in itself is not to be dismissed, that knowledge can be used to better understand and thereby better address various hardships of autism. It could be used to create more accurate diagnostic systems with associated flow-on benefits. It could be used to better predict how autism will impact an individual’s adulthood. It could of course also be used – as many fear – to isolate autism markers that could then be used as information relevant to an abortion, as we currently see with Down syndrome. The abortion issue brings with it a scary raft of associated concerns of what it would mean for those who live with autism already; will they come to be seen as people who should have never existed too?
However, I am still strongly of the view that knowledge itself is a good that should be pursued, the ethics of what is done with that knowledge is always an important issue, but all the unknown goods that could come from it should not be thrown away in fear. We may find there are different types of autism, where some are natural variants which bring great benefits on the whole, while other forms come about by some sort of environmental insult that causes the individual to go through otherwise avoidable and serious suffering. If we can’t even see the difference between the types, we’re doing both versions a huge disservice.
Considering my personal views then, why wouldn’t I let my son and my family go through a bit of short-term pain and annoyance, for these grand potential benefits? The answer, for me at least, is that I have no right to put my own lofty ideals above my son’s present well-being. In the calculus of benefit versus disbenefit and my obligations as a mother, this is not something we choose to take part in. As an adult one day, that is a decision he could make for himself, and I respect and understand why many autistic adults can and will choose to donate their DNA to such studies. I completely understand why caregivers will volunteer their children too; I don’t want to come across as attacking those positions. For us though – for me, and for my son at this age – it is not the right thing to do.
If there had been public reassurances and open consultations to address these concerns, others would not be so strongly against the study. Or if there was little pain and much immediate benefit involved with providing the DNA. But neither assurances can be realistically given; you simply can’t promise data that will become public won’t be misused, and (as I understand it) you can’t provide high benefits for those involved in studies because that too is considered unethical (think of issues around paying people for their blood and organs).
I make the right decision for us, you need to make the right decision for you. There should be no pressure or fear involved in that decision-making either way.
I would be interested in hearing whether you are going to or would take part in a study that gathers “autistic” DNA, and why.