Library Administrator Mistakes FOIA Request for Human Subjects Research

Sometime human-subjects alarmist Michael Zimmer sent requests for public documents to 30 public libraries. Though most librarians welcome requests for information, in the age of the Common Rule, you can't take anything for granted.

[Zimmer, Michael. “New Project on Privacy and Cloud Computing in Public Libraries (and Some Aftermath).” MichaelZimmer.org, January 9, 2015. h/t Rebecca Tushnet]

Zimmer reports:

One library administrator seemed to take some umbrage with my project and approach. That director emailed a larger list of library directors asking if anyone else had received my records request, noting that “There is no promise of anonymizing the data or offer to opt out of the study, which is a typically included in studies these days” and expressing surprise that my IRB would approve such a methodology. (I learned of this concern due to that director’s email being forwarded to a privacy list hosted by the ALA that I’m a subscriber to.) I’ve since replied that this methodology doesn’t involve human subjects, and follows common approaches to obtaining government information (such as the Fordham Center for Law and Information Policy’s excellent research on privacy and cloud computing in public schools). I’ll reach out to this director personally, and hopefully the concerns will be put to rest.

Hospital Blocks Access to 18th Century Records

Pennsylvania Hospital has refused a graduate student's request to see 18th century medical records, citing HIPAA concerns.

[Melissa Dribben, Health-record privacy impeding medical research," Philadelphia Inquirer, 13 March 2012. h/t Michelle Meyer.]

The Dormant Right to Ethical Self-Determination

The Common Rule, in 45 CFR 46.103(b)(1), requires that each institution receiving funding from a Common Rule agency must submit an assurance that includes

A statement of principles governing the institution in the discharge of its responsibilities for protecting the rights and welfare of human subjects of research conducted at or sponsored by the institution, regardless of whether the research is subject to Federal regulation. This may include an appropriate existing code, declaration, or statement of ethical principles, or a statement formulated by the institution itself.

In contrast, OHRP's Federalwide Assurance requires U.S. institutions to pledge that

All of the Institution's human subjects research activities, regardless of whether the research is subject to federal regulations, will be guided by the ethical principles in: (a) The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, or (b) other appropriate ethical standards recognized by federal departments and agencies that have adopted the Federal Policy for the Protection of Human Subjects, known as the Common Rule.