My friend, former housemate and bartender extraordinaire (oh and brilliant scientist) Emma Burrows is having a Pozible fundraiser for the research she is doing to find a cure autism. You have until December 9 to get on board. The science itself is fascinating, and there is an argument for donating on that basis alone. The potential for making the world a better place is high, but there is no denying there are some very tricky ethical issues to face. I’d like to give the campaign some publicity, because overall I think it is worth supporting, but I also think that a discussion of the issues involved is very worthwhile as well.
I’m going to be writing a feature on the research for Australasian Science for next year, but as yet I only have Emma’s explanation over coffee, so I can’t be too detailed. Autism is far too complex to be explained by a single genetic switch the way, say Huntington’s Disease can. (Although Emma’s supervisor Tony Hannon has been at the forefront of demonstrating that even Huntington’s, once thought the ultimate example of a purely genetic condition, has an environmental component.) Nevertheless, there are definitely genetic components and some of these have been identified.
One of these genes can be altered in mice, and the consequence is animals that behave in ways that resemble autism. For example, the mice become unsociable with other mice (although they seem to like people), and when Emma places an unusual object in their cage they become obsessed with it, rather than sniffing it briefly and losing interest like neurotypical mice.
Emma went to Cambridge recently on a Victoria Scholarship (did I mention she used to me by housemate? Let me do it again) and she has come back with a bunch of touchscreen tablets for mice. Not with mice, cause they are touchscreens, but for mice. The mice can be taught to press the screen in the appropriate places to operate them. When given memory games they are rewarded for the right answer with a shot of strawberry milkshake. It turns out mice really like strawberry milkshake and get very motivated. Emma says they get so fast at taking the tests they appear to be little blurs whizzing backwards and forwards across the screen.
Comparisons of how neurotypical mice and autistic mice respond to the challenges can teach us a lot about the differences between the two, and about what can be done to improve the brain-functioning of the autistic mice, and hopefully this will be applicable to autistic humans. There may also be implications for ways the population as a whole can use computers as learning tools.
So I am totally down with the exciting potential of this research. Plus I like the idea of mice playing computer games. But that doesn’t mean we should ignore the ethical issues.
Most obviously, this is animal research. For some people that is all they need to hear. How dare we use animals to cure our diseases, denying them their subjectivity and rights?
I can see where these people are coming from, but I guess I am just too utilitarian to agree. Where animal research can be done that doesn’t hurt the animals much, and greatly benefits humans (or other animals), I’m all for it. Indeed I think that many, though certainly not all, the people who make these arguments have not thought through the implications of their position. Should we let the Tasmanian Devil go extinct, for example, rather than do experiments to save it? Are experiments only allowed on Devils, not on other species that may shed light on the Devil’s condition? If we can conduct animal experiments to save a species are we really going to then say that we can never do experiments that might save the lives of millions of people? It is a mark of their failure to wrestle with these issues that many of those who oppose the use of animals in medical research have responded by lying to an extent that would make climate change denialists proud. While some opponents honestly face the implications of a world where all animal research is banned others retreat into utterly false claims such as “98% of human diseases do not occur in animals” or “testing on animals has no research benefit”.
Nevertheless, even if one accepts that some animal research can be justified, that doesn’t mean it is all ok. The severity and frequency of what we are trying to cure matters, as does the chance of success. Equally importantly we need to look at how much suffering is caused to the animals. I’ve covered research where that pain was obviously considerable, and I was not convinced the knowledge we would gain was worth it.
Playing computer games for reward sounds like a pretty good life to me – I know plenty of people who would sign up like a shot if it was on offer. The mice live in warm, dry cages that are probably more pleasant than the homes of most of their wild cousins. It is hard to know if the autistic ones suffer in some way, but there are no signs of physical pain and, whatever Douglas Adams might have said, I doubt they have the self-reflection to feel aggrieved.
The aspect of the research I do find troubling is that, when the experiments are over the mice are killed. In some cases this is so researchers can study their brain development in ways that still can’t be done with imaging devices. In others it is simply because the laboratories just don’t have the facilities to look after hordes of retired mice.
Anyone who thinks that the people who do this research are callous or unnecessarily cruel to their animals really has no idea. I’ve seen the distress it causes Emma when she has to euthanize the animals she has been working on. Indeed we had discussions about the possibility of my house becoming a shelter for one mouse Emma became particularly attached to.
The answers here are not easy. The life-expectancy of mice in these labs is probably similar to those in the wild exposed to all the disease and predators involved there, but is that enough to justify it? I think so, but I can’t say I’m comfortable with the decision.
Should We “Curing” Autism
This is one I find a bit easier. Some people with what used to be known as Asperger’s, now relabeled as high functioning Autism Spectrum Disorder, resent the idea that they need curing. The capacity of some people with autism to do things that no neurotypical can – be it manipulate numbers or draw extraordinary things from memory are pretty desirable, both to the individual and society as a whole. Doesn’t talk of a cure just stigmatize people in the same way that it would if we talked about “curing” skin colour?
The research isn’t really aimed at the sort of people able to enter into these sorts of debates, but I have no doubt that, if a way is found to prevent autism, there will be losses as well as gains. Medical tools, once available, have a way of being used in cases where it probably shouldn’t. However, a small number of savants should not blind us to the obvious distress, both the parent and child, faced in more common and severe cases.
Even in regard to those who are capable of wrestling with these issues I suspect that those opposed to the notion of a cure are the minority. Although I have never been diagnosed as autistic, and indeed I have friends who work in diagnosis who scoff at the idea, I think I can talk about this from the inside. However, these people did not know me as a child. I have absolutely no doubt that any child in recent years showing the behavioural pattern I did three decades earlier would have had an Asperger’s label slapped on them so fast their forehead would sting. I’m not fully sure how the new classification system will work, but I suspect that such a child will in future be identified as having ASD.
Clearly there have been benefits to my unusual brain wiring. I am proud of my mathematical skills, even if they are now largely neglected. My analytical skills are respected in the Greens and wider environmental movement and considered of substantial value. It is certainly possible that any treatment would have damaged these. And in the meantime, even talking about cures contributes to stigmatization.
Nevertheless, given the choice, I am pretty sure that some sort of treatment would have been beneficial. I was extraordinarily lucky in my upbringing. A family that prized intellectual skills, 90% of my schooling at quite extraordinarily welcoming schools. Yet still, the awful, awful pain of social awkwardness that came from being almost entirely incapable of reading non-verbal cues or understanding social etiquette without having it explicitly explained. If for me, with about the best environment imaginable for someone with very mild autistic symptoms, this was torture, how must it be for so many others?
A fundraising telethon for the bionic ear was interrupted when deaf activists succeeded in cutting the transmission. Their fears about what the ear would do to those who drew a sense of identity from their deafness have turned out to be warranted. Yet hundreds of thousands of people have received the cochlear implant and been deeply grateful for it. The concerns expressed about pathologising normality need to be addressed, but halting research is not the way to do it.
Letting Government Off The Hook
The Pozible campaign is an example of an increasing trend – crowd-funding scientific research. It suffers from the same problem that all such campaigns do. If people of conscience fund science governments may take it as a license to cut their research budgets, forcing the burden of paying onto those who care, while the Clives and Ginas get off with lower taxes.
It’s basically the same issue as discussed here in relation to the people chipping in money to allow the Climate Commission to rise from the ashes of Abbott’s cuts. However, in that case there was at least the propaganda value of demonstrating that people cared. It is far from clear that success in campaigns like this will have the same PR value.
Moreover, there is an argument that in by-passing the peer review process for ARC funding we will see research that sounds good, but actually has little merit, get funded while good research goes begging as a result of government cutbacks.
Troubled as I am by this issue, I do think there is a case for crowd-funding of science as an alternative. Peer review is definitely the best way to assess funding applications, but it is not perfect. Left field ideas may be unfairly penalised, as may proposals with small chances of success but huge payoffs if they come through. Moreover, it is possible for ideas to be rejected because the scientists making the judgments don’t realise how important the topic has become to the community. And most often of all good ideas don’t get funded simply because the process is such a lottery, with overworked reviewers lacking the time to really examine things closely.
Consequently, having a back-up source of funding with a different selection method may be a good idea. It might on average be worse at allocating funds, but it forms a second chance for the really good idea that might get missed. Philanthropic funding performs this role to some extent already, and crowd-funding could in many ways be better than relying on a single donor, even one often advised by experts.
While government defunding is a huge concern, it is unlikely that science funding will be cut on a dollar for dollar basis as crowd-funding rises. If we get ten million dollars in through appeals like this one, and lose five million to Hockey’s razor gang, that’s not a great outcome, but it is probably a net step forward.
The final question is whether research like this provides maximum value for donor dollars. I try to be quite strategic with my donations. I work out how much I can afford to give based on my income for the financial year and my expenses and donate most of it to the causes I consider give best value for money: Oxfam, Scarleteen and Solaraid (If Scarleteen and Solaraid were tax deductible in Australia they would take clear precedence for their extraordinary efficiency with money). I give smaller amounts to a bunch of other causes on the basis of picking roughies, or because they have particular personal resonance (eg the Asylum Seeker Resource Centre, for reasons described here).
For anyone giving money this way I think it is hard to argue that you’ll get the best value for your dollar out of this research.
However, my largely rational approach to donating is pretty rare. It seems most people give on the spur of the moment, and their money is as likely to come at the expense of a new TV or a big night out as other causes. Indeed, it is possible that the fact that I give in the way I do is further evidence of my high-functioning ASD.
If you’re intrigued by the project, or have a particular concern about Austism there may be a few better ways to spend your money, but many, many far worse ones.
After all that am I going to contribute? Yes, possibly at the expense of my credibility on the rational allocation trumpeted above. Some time ago I promised to put some money towards something along these lines in return for a favour. I never got round to it, and that has been gnawing at me ever since. This seems the perfect opportunity to make things right.
Update: Emma made two points to me, one of which I had already tried to make, but may not have been clear on and one that had not occurred to me but is exceptionally important.
Emma pointed out that this sort of funding is appropriate for where small grants are needed for high risk small projects, rather than for “big science”. I agree. Some academics have argued that doctoral theses are getting more safe with students encouraged to do work with a guaranteed small payoff rather than something that might be huge or might go nowhere. I don’t know how true that is in those cases, but something similar is certainly happening for research in general, and this might counteract that.
More importantly, Emma points out that the effort that goes into getting ARC grants is huge, and for something like this it may actually require less work for researchers to crowdsource the money than to work on the grant application. That certainly says something is very wrong with the ARC/NHMRC process. This may not be the best way to fix it, but it might be better than nothing.