Joining Recovery.gov, USAspending.gov and Regulations.gov is Data.gov, a website hosting government data sets from Executive Branch agencies (H/T Science Progress).  It is still somewhat thin, with only 47 data sets, but they are available in different formats. You can find other data sets through open government groups like the Sunlight Foundation, or hosted by Amazon.  Additionally, the website is taking suggestions for what datasets to add.

Aside from the potential of this website as a data tool, this provides another resources for third-party examination of government data.  With the increased availability of programs to crunch, collate, sort and analyze data, going back through “old data” like that available on Data.gov could provide new insights and information we couldn’t get before.  I expect non-governmental organizations like the Sunlight Foundation to stay ahead of government efforts in this area.  What websites like Data.gov provide is additional encouragement to make more government data available and/or easy to work with.  With a multitude of data formats used today, there is no guarantee that a Census data file will be easily matched with Bureau of Labor Statistics information.  Hopefully more disclosure will help address these formatting concerns.

No, the National Institutes of Health are not going up against Merck, GlaxoSmithKline and the other companies of Big Pharma.  They are going to start drug development research on so-called “neglected” diseases (H/T ScienceInsider).  The $24 million program (less than .1 percent of the total NIH budget) to establish a drug development pipeline will trigger a new initiative called Therapeutics for Rare and Neglected Diseases (TRND) coordinated through the NIH Office of Rare Disease Research.  The NIH defines a rare disease as one that affects fewer than 200,000 Americans (less than .067 percent of the population), and estimates there are 6800 rare diseases affecting 25 million Americans (nearly 1 in 10 of us).

I think this is a perfectly reasonable thing for government to take on – fill in the gaps in biomedical development that are not currenlty being addressed by the private sector.  Given the costs of pharmaceutical research, companies often focus on diseases or conditions that affect millions of people.  Government can also make any drugs developed for these diseases available relatively cheaply, as they are not motivated by profit in these endeavors.

On May 9, EPA Administrator Jackson issued a memo to all EPA employees about scientific integrity in the agency (H/T OSTP Blog).  Keeping in line with the Obama Administration’s scientific integrity memo, scientific integrity is not defined in this memo.  While referencing the agencies previous efforts in this area, including whistleblower protections, Administrator Jackson notes that she has asked the EPA Science Council to assess EPA efforts and gaps in this area:

“The SPC at my request is inventorying all our guidelines and policies that relate to scientific integrity to look for gaps and possible areas for improvement. One SPC focus, for example, will be updating and reaffirming EPA’s Peer Review Handbook and recommending how we can improve implementation of our peer review policies across our programs and regions. I also have asked the SPC to work the National Partnership Council to reaffirm the Agency’s Principles of Scientific Integrity and update the Principles of Scientific Integrity online training.”

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Picking up on a post from last month, ScienceInsider and others have reported on a lawsuit that may test the validity of gene patents.  The Public Patent Foundation and the American Civil Liberties Union have filed suit against Myriad Genetics, which is the company owning the patents, and controlling the genetic tests, for the BRCA1 and BRCA2 genes that show a predisposition to breast cancer.  Among the allegations is that the monopoly on these genes and the associated diagnostic tests prevents patients from obtaining a second opinion.  Apparently any examination of these genes requires permission from Myriad Genetics, which seems like an overreach of the traditional conception of the protection afforded patent holders.  The consequences to individuals include the inability to have other scientists assess the results of the tests and the influence of these genes on the potential for cancer.  General effects include a chill on research into these genes, and other consequences addressed by Nobel laureate in Physiology or Medicine Sir John Sulston.

It’s unfortunate that the validity of gene patents is going to be tested in this fashion, as I don’t expect this validity to be shaken.  Perhaps it’s a consequence of the deep pockets necessary to participate in a patent infringement case (on either side), but I think some kind of fair use or research exemption arrived at through an infringment action is a stronger legal claim than infringement of free speech.  Since the state of genetic understanding over the last several years has typically exposed more about what we don’t know that what we do know, to restrict access to genes like BRCA1 and BRCA2 appears to cause more harm than good.

While the current administration has managed to fill a number of science and technology positions much faster than its predecessors, there are still some notable empty chairs.  NASA, the National Institute of Standards and Technology (NIST), and the National Institutes of Health (NIH) remain under the care of acting chiefs.  The NIST and NIH positions have been open since before the election, and unfortunately there’s been a history of long-serving acting heads of both agencies.

There has been some recent movement.  Shere Abbott has been confirmed as Associate Director for Environment at the Office of Science and Technology Policy.  This week Thomas Frieden was appointed to head the Centers for Disease Control, and Zachary Lemnios was tapped to be Director of Defense Research and Engineering at the Department of Defense.  Similar subcabinet appointments have been made in the Departments of Agriculture, Energy, and Health and Human Services.  While most of these nominees are recent, the nominee for FDA Commissioner has been waiting for six weeks, and the Federal Communications Commission nominee has waited since the beginning of March for their confirmation hearings.  A chart of many relevant federal positions in science and technology is available online.

Last Friday the National Institutes of Health issued a request for comment in the Federal Register (H/T ScienceInsider).  They seek comments on whether or not the current policies on conflicts of interest need to be amended.  Comments are due July 7 and can be submitted online, by mail, fax, or in person.  Check the request for specific submission instructions.

The focus of these policies is on research involving human subjects or other research where the Public Health Service may be involved.  There are some specific questions they are seeking comments on, which I’ve summarized after the jump.  Consult the request for comment for additional details.

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Picking up from last week’s posts on the science of science policy, I want to shift emphasis to what happens after the research program generates useful information about relevant investment decisions.  Here things move from the rationality encouraged by Dr. Marburger to the competing interests and priorities of politics that may make any useful knowledge generated by the research program wither and die.  He’d be the first to admit that he doesn’t have a good idea about how to address this problem, and I make no claims that what follows will fit the bill either.  But there is no effective S&T wide discussion of strategy and tactics in approving policy, and the lackluster record of this community reflects it.  We need to change how we support our arguments and desired policies, as well as adjust the strategies and institutions we use to give these policies life, if there is any hope of being taken more seriously than we are at present.

Many of the science and technology organizations in Washington are disciplinary in their focus, and are more concerned with advocacy than research.  While it certainly makes sense in supporting the interests of their members and their disciplines, it can lead to a diffusion of effort in support of science and technology.  the biological sciences and the engineering disciplines have umbrella organizations (FASEB and IEEE, respectively) that help alleviate some of this stovepiping, but the basic problem remains.  The organizations that are arguably for all of science and technology – AAAS and the National Academies -  are more involved with their research and service activities, and what advocacy they do is relatively mild.

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There’s an interesting call in Foreign Policy for a greater use of American scientists in foreign policy.  By the authors’ definition of science diplomacy – “scientific cooperation and engagement with the explicit intent of building positive relationships with foreign governments and societies” – the State Department is not nearly doing as much as it could.  The more specific recommendations are nothing particularly new, though it is worth noting that the article has a rare use of H-1B visas outside of an economic competitiveness context.

Unfortunately, the authors failed to address what steps the State Department has taken over the last ten years to improve its efforts in using science and scientists to support its policy objectives.  I think the authors’ criticisms are valid.  But to recommend the appoinment of a senior ambassador for science and technology cooperation without mentioning the existing science adviser to the Secretary of State is odd.  Do the authors think the position isn’t working?  Do they know it exists?  I would hope so, as one of the people who held the position, Dr. Norm Neuriter, currently works for the AAAS, as does one of the authors.  Do they have any comment on whether Senator Lugar’s bill creating science envoys would address their concerns?  Not in this article.  Clearly more debate and discussion on this issue would be worthwhile, just to see if everyone interested in the topic understands what’s currently going on.

While this won’t satisfy everyone, oversight of the spending in the stimulus package will include scrutiny of science agencies.  As the stimulus spending represents significant increases for most of these agencies, this only makes sense.  The House Science and Technology Committee has held hearings on the subject, and various agencies are training their personnel to be more aware of the potential for fraud and abuse.  While past practice suggests that NASA and DOE will be the more likely agencies for fraud and abuse, the sheer volume of the funding increase at the National Institutes of Health should draw additional scrutiny.

This is all well and good.  I simply hope that the differences between scientific misconduct and contractor fraud and abuse are remembered moving forward.  Both are serious, but finding evidence of each will require different skills and techniques, and the deception at the heart of each offense is very different. Inappropriate cost overruns or profligate spending are not the same thing as fraudulent grant applications or reporting of research results.  As the former is the more likely abuse, I’m concerned that incidents of the former will be confused for the latter.  Given the challenges scientists have in communicating what they do right, problems in communicating what they do wrong are likely, and could be more damaging.

I attended last week’s Bromley Lecture (in honor of D. Allan Bromley, science adviser to President George H.W. Bush) by Dr. John Marburger, President George W. Bush’s science adviser and head of the Office of Science and Technology Policy.  As suggested by the abstract, the bulk of Marburger’s remarks focused on his call for a science of science policy and what that means.  Today I’ll post about what Dr. Marburger said, and tomorrow I’ll spend some time discussing what else is needed to fulfill the notion of science of science policy as envisioned by Dr. Marburger.

The summary that follows is based on my notes and recollections.  Any misrepresentations are mine and mine alone.  If you were there and think I mischaracterized something, please comment or contact me off-blog.

Dr. Marburger came to the job from a notable research and research administration career, having served as President of SUNY-Stonybrook as well as Director of the Brookhaven National Laboratory.  He acknowledged that taking the job opened his eyes to science policy beyond his narrow slice of the pie (physics, mostly).  Moving quickly from his background to an overview of science and technology policy, he used a series of charts to note two points that often need repeating.  First, the pattern of public support ($) for science is typically reactive to random, outside events.  Second, there is no apparent systematic approach to support for science and technology funding.  The latest evidence of this was the addition of $6.5 billion to the NIH stimulus bill funding by one senator.  In other words, narrow advantage trumps objective planning. These repeating themes prompted Marburger to respond as a scientist and attempt to place some order on the chaos.

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