Group compromise: perfect cases make problematic generalizations

Rothstein argues that groups may be harmed by research on deidentified data. He concludes that researchers are obligated to minimize group harms and demonstrate respect for a studied group through robust opt-out capacities, information about the possibility of group-based harms, and publications referencing the group that reflect "extraordinary caution and precision." Like other commentators, Rothstein uses as a touchstone example for group harm the research at Arizona State University involving the Havasupai. The Havasupai contended that research originally intended for diabetes, a significant health problem for them, was extended without permission to mental illness and migratory patterns-the latter challenging critical cultural traditions. The tribe's lawsuit was recently settled on published terms that included payment of $700,000 to 41 individual plaintiffs, benefits for the tribe such as telemedicine, and scholarships for tribal members to several Arizona universities (1).