Human Research Loopholes: Alive and Well | Electronic Frontier Foundation

30.12.15

Human Research Loopholes: Alive and Well | Electronic Frontier Foundation: The Common Rule was created in 1991 as an outgrowth of the Belmont Report, a series of ethical and principles and guidelines created by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research to address issues raised by the Tuskegee experiment. The Common Rule claims to strike a balance between the three goals identified in the Belmont Report: 1) respecting persons, 2) ‘beneficence’ (i.e., maximizing the social value of science and research), and 3) justice.

This federal policy purportedly binds the Department of Health and Human Services (HHS) and numerous other agencies, including the CIA and Department of Homeland Security (per Executive Order 12333). But as we’ve seen, these agencies are adept at honing in on small loopholes, so the proposed language needs a serious edit if it is going to provide any real protection.

EFF filed a comment when HHS first proposed this update in 2011, and we are drafting a new comment laying out our biggest concerns to file by January 6, 2016.