The criteria for human-subjects protections depend on an unstated assumption that we argue is fundamentally problematic: that the risk to research subjects depends on what kind of data is obtained and how it is obtained, not what is done with the data after it is obtained. This assumption is based on the idea that data which is public poses no new risks for human subjects, and this claim is threaded throughout the NPRM.

Ethical codes often emerge after a crisis event. The Common Rule developed out of a rule-making process initiated in response to a series of breaches to the public trust, especially those committed by physician-researchers. Following the Nazi-era medical atrocities, the Nuremberg Code (Nuremberg Code, 1949) and the Declaration of Helsinki (World Medical Association, 1964) established ethical norms for human-subjects research, while building on the 1931 Guidelines for Human Experimentation (Ghooi, 2011).

there is real urgency to define what a “human subject” is in Big Data research and critically interrogate what is owed to “data subjects.” What lessons might we learn from the history and implementation of human-subjects research protections in order to better address these growing conceptual and structural discontinuities?

For the most part, the basic science conducted in these fields has had only distant contact with human data. Researchers represent themselves as dealing with systems and math, not people—human data is treated as a substrate for testing systems, not the object of interest in itself.

“the authors are aware of, and respectful of, the privacy of [subject name removed] and his relatives and have thus only used data in the public domain” (Hauge et al., 2016: 5). This claim is particularly striking, as it is difficult to see how tracking a specific individual (and their family) to such an invasive degree could be considered respectful of their privacy.

For the others on his list, it's as simple as keeping an eye out for all the key words listed above. Before clicking "I agree," do a quick search (or just CTRL+F) for:Third parties and affiliates.Opt-out.Arbitration (You will find a whole section dedicated to arbitration usually).Waive or waiver.