The blog of the Presidential Commission for the Study of Bioethical Issues

Commission Calls for Transparency in U.S. Government-Funded Research

As the Presidential Commission for the Study of Bioethical Issues continued its assessment of current protections for human subjects in research at its public meeting in Boston this afternoon, Commission member, Christine Grady, proposed that the Commission recommend improving transparency in U.S. Government-funded research.  Grady said that federal agencies could develop systems – or improve existing systems – to establish a publicly available listing of federally supported human subjects research. The call for such systems is in line with increasing appeals for government transparency and public access to information about research.

The recommendation stems in part from the Commission’s own Landscape Project.  As it worked to define the volume and scope of scientific studies supported by the government, the Commission found information to be incomplete, with no single listing available.  The Commission therefore requested basic data directly from eighteen federal departments and agencies to define the “landscape” of federally supported human subjects research. 

Commission Member, Lonnie Ali, expressed surprise at the lack of publicly available information because this research “involves individuals and people” – surprise echoed by other Commission members as well.

Amy Gutmann, Commission Chair, explained that such a database is not a “magic bullet” in assuring that human subjects are adequately protected from harm or unethical treatment.  But, she continued, although not sufficient, such a database is absolutely necessary to ensure ethical research. Without transparency into what research the federal government is supporting, there cannot be accountability in the conduct of that research. 

Commission Member, Dan Sulmasy, echoed that thought, saying that although a listing of U.S. Government-supported research projects cannot, in and of itself, reveal problematic research, it can provide insight into where to look to further to examine the ethics of research taking place.

The Commission’s final report, with recommendations, will be presented to the President and posted for public view in mid-December.

2 Comments to Commission Calls for Transparency in U.S. Government-Funded Research

  1. January 11, 2012 at 3:26 am | Permalink

    I support the call. I just read a post by John Donnelly about the possibility to read thoughts in the nearest future, which does not seem fantastic, and looks like ethics protection systems need to be developed now. Otherwise, our privacy will be compromised very soon.

  2. David Gisselquist's Gravatar David Gisselquist
    February 5, 2012 at 7:29 pm | Permalink

    It’s good to see calls for more transparency in medical research. Transparency promotes not only better ethics but also scientific rigor.
    Transparency discourages unethical research. Consider the Tuskegee syphilis study. What stopped it cold was the NY Times reporting what was happening.
    Transparency promotes scientific rigor. As currently practiced, most government funded medical researchers do not publicly post collected data (with care to protect participants’ confidentiality), and do not even disclose what data they collected (questionnaires and data collection forms). In practice, researchers collect a lot of data, and can then choose to report only data that support their desired conclusions. The rest they can hide, and one knows what they collected and chose to hide. If physics researchers followed the same model we’d probably be reading a lot of papers proving cold fusion, perpetual motion, etc.
    I endorse the committee’s call for transparency. But let’s not be so timid. When the US government pays for medical research, ask researchers to put questionnaires, data collection forms, and all raw data into the public domain for everyone to see.

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