Non-Consensual Disclosures

In the course of biomedical research on humans—for example flu, imaging, and genomic studies—researchers often uncover information about participants that is important to their health wellbeing sometimes even others. many cases, not anticipated in advance, did consent receiving it. For example, when first U.S. Covid-19 case appeared Washington early 2020, a group researchers had already been collecting nasal swabs for Seattle Flu Study possessed thousands recent samples. The believed they an ethical duty test samples coronavirus disclose results, accordingly proceeded do so, despite regulatory obstacles agency disapproval. Many tested positive, team reported findings public officials affected participants. This Article examines law policy governing human subjects research, focusing set regulations known as “Common Rule,” which requires inform study participants, at stage, whether individual will be returned them. Study’s materials naturally might receive results. Arguably, then, support return those violated Common Rule disclosed I argue have strong reason results disclosure only context public-health emergency. Covid shows how high urgent stakes can be, but should seen or treated exception rule against returning current scheme stands way disclosures, putting perilous position, where able fulfill duties without violating legal ones. Although we need contend with autonomy welfare risks associated mention financial administrative costs, these downsides are similarly present analogous scenarios non-consensual warnings legally permitted required. There no good make it comes issuing form disclosure. To aid difficult determinations warrant return, I makers take advantage interest willingness bioethicists, researchers, others develop consensus norms, incorporate norms into through process call “gentle” incorporation. upshot would permit whenever standards recommend this way, space conduct necessarily compelling At same time, bioethicists train attention non-ideal settings—the focus Article—rather than assuming hoping chance advance.