Recently I have been approached by a clinic in Austin that operates under the assumption that there is a causal relationship between childhood vaccinations and autism.
This will not the first foray into the thick of bio-ethical debates. I have, in the past, advised both planned parenthood and catholic clinics on how to use open source healthcare software.
My policy for organizations like this is simple: I almost always help them. My software or software ideas can improve the experience of patients at any clinic, even if that clinic is taking a position on an ethical issue that I am unsure about or against. Most importantly there is nothing that I can do to change the position of the clinics in question, one way or another.
I hope that in the end, open source software will help to resolve some of these ethical debates by providing a cheaper means to get better quality data. While my opinions cannot change policy better data can.
So will I help this clinic? Probably. Will I allow this clinic to advertise my help as any kind of endorsement? Definitely not. Which is basically the same position I take on any reasonably complex bioethical issue where I can see both sides of an issue. Of course many in my community would say that members of the anti-vaccine community do not deserve this kind of benefit of the doubt.
Before climate-gate I might have agreed. But now I am much more sympathetic to arguments that run contrary to modern scientific consensus. I fell very betrayed that centrally referenced climate data was fudged by respected scientist in order to support a very specific conclusion. Because of the pharmaceutical corporate interest I am afraid that vaccine safety data might have been similarly fudged.
It is my hope that providing a clinic with a dramatically different agenda than the main stream medical community with cheap and effective tools to do advanced data gathering and analysis that I might provide them with a kind of truth-over-pressure. If vaccines can cause autism, then they should be able to generate some reproducible data that shows that. If vaccines do not cause autism then by giving this clinic better data tools I hope that I might be able to create a kind ideological implosion within the organization. I hope that I am not enabling an organization that is torturing kids with invasive, traumatizing procedures for nothing. But unfortunately I am not in a position to make that determination.
I hope, truly, that I am right to take this approach. I hope that the assumption that transparent code plus transparent data can create pressure to find the truth for other difficult issues is right. It feels like, more and more like I am betting more than my career on this idea of open source software in healthcare… I am betting my conscience too.
I would like your comments about my approach generally and about this situation specifically.