Federally funded autism research

James Madison famously wrote, “If men were angels, no government would be necessary. If angels were to govern men, neither external nor internal controls on government would be necessary”. He also added that, “In framing a government which is to be administered by men over men, the great difficulty lies in this: You must first enable the government to control the governed; and in the next place oblige it to control itself.” People need government because they are not angels and therefore need a way to control themselves. In civil society this applies to most areas of human endeavor whether it be governments or research.

In the Unites States, as a way to control the government, several different domains were created: legislative (with 2 separate houses), executive, and judicial. Also we have state and federal overseers both of which are modeled by the aforementioned three branches, although at the state level this structure is not required. This organization presumes a hierarchical arrangement where, in an ideal scenario, members would act in a nonpartisan and impersonal way. Government in this regard is subservient to the people it serves. However, as I have previously stated, men are not angels and unbounded idealism quite often leads to a state of nihilism.

Research at the federal institutes (e.g., NIH, NIMH) follows “conventional wisdom”. Many executives follow this dictum as none of them have ever been fired for playing it safe. Conventional wisdom means accepting ipso facto the cumulus of ideas generally accepted by the scientific field. But the only thing true about conventional wisdom is that of being trite or conventional, otherwise there is little to say about the wisdom of this approach. Research turns stale when it follows the crowd. In 1962, Thomas Kuhn famously wrote that scientific breakthroughs came only from a paradigm shift. Scientific progress is therefore not the result of additive baby steps, as those instantiated by the federal government, but rather of violent reactions where one’s scientific worldview is replaced by another.

Despite millions of dollars spent by the NIMH in autism research it is easy to presume that 99% of the same is totally wasted. Probably the same thing can be said of AutismSpeaks or the SFARI organization. There have been no major discoveries in autism and those touted by the news media usually correspond to the lowest type of research: science by press release. Given the magnitude of money spent by federal funding for research a bigger effort should be spent in selecting the people who direct our research initiatives.
U.S._research_funding

Autocrats and tyrants hold elections as to show that they are supported by popular demand. Shouldn’t researchers vote on how their federal funding agencies are doing? Shouldn’t leaders of the NIH and NIMH be given terms of services in similar fashion to public servants in our political system? This would make investigators more excited and informed about research. In effect, by voting people acquire a vested interest in making the establishment work better, more effectively.

I would venture a few suggestions to make the system better:

1) Leadership to be elected by the vote of researchers. Make it a condition of institutions receiving federal funding that they should save the position of those elected to serve a period of time in a federal elected office.
2) Take several candidates for NIH leadership and make researchers vote for people from other institutions, not their own. This is meant to leverage the advantage of larger institutions.
3) There should be an effort to expose special interest groups and the feeling of entitlement of the bigger academic centers.
4) Pay the director of the federal institute according to results.
5) Reward grantees in terms of productivity and authorship. In this regard, count only first or last authorship and provide a point system that is normalized to the total number of authors within a publication and the impact factor of the journal.
6) A more objective way of grading research for grant funding considerations should be taken, one that avoid personal choice and prejudices.
7) Don’t bury the importance and innovation of a research project under technicalities. Give these elements precedence when considering funding. Emphasize those projects that may make a difference in patients lives now rather than later (make an explanatory paragraph in this regard be part of the grant application).

I may suffer a confirmation bias in the sense that the more I learn about federal research funding the more convinced I become of the need for a change in this broken system. The Interagency Coordinating Committee for Autism has served to glamorize the role of the federal government and to postpone taking the hard decisions. It is a symbolic or token committee meant to stir the autism community in favor of their direction, namely that of conventional wisdom. Drastic changes need to be taken in order to fix the system.

2 responses to “Federally funded autism research

  1. the Iacc should be abolished. I don’t think there is any other medical condition in the world where we have public members who are advisors in publically financed research of that disease, not for cancer, diabetes, schizophrenia or any other. I believe it should be exclusively funded by the private sector, though I don’t think autism speaks would be much better I don’t know as much about the Simon’s foundation. I’m not sure how well positioned we are for a big discovery as human tissue is greatly limited (particularly after the freezer failure debacle), no good animal models for autism though research of harlow and Bachvalier sp? might have limited usefulness. As well as the inability of MRI and PET scanners to resolve a whole lot. Also, the fact that lower functioning persons are not compliant in scanners puts further limits on research. We need to have scientists invent some way to image the living human brain that would show as great detail as autopsy, but i don’t think that’s coming in the forseeable future. Of course, you’re the scientist and I’m not, but not sure technology has the answers yet.

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