On this issue there is much to say, but I will limit this entry to a simple expression of disappointment.
It was recently announced that an autism genetics study was paused due to backlash. From what I understand, criticism includes a failure to consult the autism community about the goals of the research and there are concerns that the research could be misused, which I assume to be a concern about eugenics. This is obviously a very complicated issue, and always there are ethical points that need to be considered; but I think the latter is a bit misunderstood and this is probably a failure of scientific communication. The genetics of autism is complex. For example, cystic fibrosis involves a single gene, so it easier to screen for it. And, when screen is done, it is has nothing to do with eugenics. In the case of autism, it is likely that there are multiple genes, if not thousands, such that prenatal screening seems incredibly unlikely – not that this was an intended outcome of the research anyway. Furthermore, while I understand some have concerns about eradicating autism as though it were an illness, when, in fact, it also contributes many positive traits, from what I have read the proposed research has no such intentions.
As a person diagnosed with ASD, I am very much supportive of the research. I think that, as with anything, it is best to study and understand a phenomenon as deeply as possible. Indeed, we should strive to have more of a scientific understanding of autism. At the same time, I understand that some may have ethical concerns. In science, we always have to proceed cautiously and thoughtfully. It is important to hold all scientific research to the highest ethical standards, which should be a normative process, and to also think about all possible outcomes and potential future (mis)use; but, in this case, it seems mistrust was largely down to a failure in scientific communication.
