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.
Fred: I don’t question your approach of helping any clinic that wants to use open-source software, although I would question whether you think your work will contribute to more kids going unvaccinated.
I do think you should question your feeling of betrayal regarding “climage gate.” There was no such thing. It was trumped up by the press, and all of the rigorous investigations after the fact showed that there was no scandal there at all. Not even a little bit. Check out Wikipedia’s take: http://en.wikipedia.org/wiki/Climatic_Research_Unit_email_controversy
Skepticism of the pharma industry is good, too, but be careful how far you take it: vaccines make up a tiny percentage of pharma revenue, they are by no means an area of significant profit for them, because vaccines are given once, and that’s it. If you’ve got time and you’re not offended by R-rated language, check out the Penn&Teller special on vaccination, it’s well worth it.
It’s a good idea to be skeptical on principle, but on some topics, notably vaccines and climate change, the overwhelming evidence is in.
Hi Fred,
I find your post interesting and thought provoking. The debate on the cause is certainly multi-faceted and as a clinician I can definitely see the “why and how” using many variables of the children I have treated. My husband Alfred Green provided me with this link as he recalled the conversation the two of you held at the Open Source conference in Ohio. Thank you for your advice and we look forward to expanding our use of the Open EMR system.
Hello Fred,
I just got a chance to catch up on your blog and this post caught my eye, andI agree with your stance to help this clinic even though they operate under the assumption that vaccines and autism are linked.
I was at The WLSA Conference today where Dean Kamen gave a great keynote where he asked us (paraphrased), ‘if the public were given the choice of using a new invention which would make our lives much, much easier, yet kill 40,000 people per year, would we want it?’
If it were a drug I’d say no; however, he was referring to the already existing automobile…
I believe that your method is best – your SW is a vehicle to more efficient data aggregation, and hopefully it will be used to follow the data to the truth about the link between the vaccine and autism.