The data collected from mobile mental health apps has promising benefit toward the field of mental health. The risks are usually limited to breach of confidentiality and investigators mitigate those risks by implementing processes to protect access to the data. In studies involving algorithms and personalized medicine, the risks increase. So, how do IRBs determine when risks outweigh the benefits? Read more
The digitization of everyday life has led to an interesting phenomenon for research administrators; the ethical concerns that arise from secondary uses of large and open data now pose a greater challenge for the ethical management of research data than do the conventional challenges of primary data acquisition. As debates over consent forms give way to discussions of differential privacy, it is hard to ignore the new reality that the highest levels of risk and benefit to human participants in research may now arise from secondary data uses. What should research administrators and IRB members do to understand and manage the risks and benefits? Read more
data-rich networked information technologies are unique in that they represent people’s lives and activities, bridge multiple dimensions of a person’s life, and are often collected, aggregated, exchanged, and mined without them knowing. We call this data “pervasive data,” and the increased scale, scope, speed, and depth of pervasive data available to researchers require that we confront the ethical frameworks that guide such research activities. Read more
