The Transactional Records Access Clearinghouse at http://trac.syr.edu is a data gathering, data research and data distribution organization associated with Syracuse University. David Burnham, Washington based, and one of the two-lead creators of TRAC, will be in class on October 18.
In Burnham's words:The purpose of TRAC is to provide the American people -- and institutions of oversight such as Congress, news organizations, public interest groups, businesses, scholars and lawyers -- with comprehensive information about federal staffing, spending, and the enforcement activities of the federal government. On a day-to-day basis, what are the agencies and prosecutors actually doing? Who are their employees and what are they paid? What do agency actions indicate about the priorities and practices of government? How do the activities of an agency or prosecutor in one community compare with those in a neighboring one or the nation as a whole? How have these activities changed over time? How does the record of one administration compare with the next? When the head of an agency or a district administrator changed, were there observable differences in actual enforcement priorities? When a new law was enacted or amended, what impact did it have on agency activities?And here are some of his comments on the potential use of TRAC for class papers:
Ideas for papers. There is too much to choose from. At our public site you see an icon for immigration. go to it and click on reports and bulletins. there now are a bunch of different reports there -- on disparity in handling asylum cases, on border patrol, on the major conflict between that DHS says and what it does. Another option is to click on TRAC Reports icon and reports and bulletins. Of special interest, perhaps, is a long report we post a little more than a year ago on "terrorism enforcement" in US during the five years after 9/11. Also could go to the Interpreter tool on the free page -- 5 year monthly data and 20 year annual data are available. Automatically updated each month. Here are PDFs to two articles: one in the NYT and one in the WashPost. One interesting fact about the data in the NYT article is that it is only available from TRAC. Actually is suppressed by the courts. What I liked about both articles, however, is that they were independently initiated by the reporters -- not just picking up on one of our reports -- and are a great example of how TRAC is supposed to work.
Though we applaud the desire of Ardais to implement strong privacy protections in its biobanking model, the problems of autonomy, entitlement, and governance outlined in our article remain troublesome. For example, the structure described by Otten and colleagues contains no mechanism for informing donors or the hospital's institutional review board about the specific uses of samples and contains no mechanism for group consent when, for example, ethnic groups are studied, even though both of these mechanisms have been recommended by the National Bioethics Advisory Commission. The structure they describe also denies the donors rights to any new treatment developed from their donations, even when they cannot afford such treatment, and it does not always adequately represent the medical and financial value of donated tissue and records on the consent form. Can this sort of process really be said to "put the patient or donor first"? Academic medical centers face difficult choices in deciding how to handle the new market value of donated tissue and medical information. We argue that a collaborative model, embodied in a charitable-trust structure, is economically feasible, socially preferable, and scientifically advantageous. As the Framingham Study amply demonstrates, people and their good will - not just their samples or health records - are the real resource. We are cognizant that our proposal goes against the grain of privatization in the medical-research arena, but our proposal does not work against market logic - it only allows the donor community to maximize the altruistic value of its gift.Question: what is the state of play today on being able to provide the protections needed while also providing the access for medical research? What are the remaining problems? What might be some new solutions, given the current advances in accountability and anonymity?