By Matt Williams
The origin stories of the development of Institutional Review Boards for the Ethical Treatment of Human Subjects in Research (IRB) serve in-part as founding myths, part cautionary tales, and part nightmarish histories that are familiar to all researchers. I received my IRB training at an institution that is inseparable from that formative moment in social science, when researchers were willing to pursue a hypothesis at the risk of the emotional and physical safety of their participants. As a Jim Joseph Fellow at Stanford University’s PhD concentration in Jewish Studies and Education, I went on a pilgrimage, of sorts, to the basement of Jordan Hall (aptly named after David Starr Jordan, an early Stanford President and enthusiastic eugenics researcher). Jordan Hall was the site of the Stanford Prisoner Experiment, one of the most damaging and troubling social scientific experiments of the twentieth century. The subject of – at least – two feature films, the Prisoner Experiment, conducted by Dr. Philip Zimbardo, divided a random group of participants into guards and prisoners in an elaborate fake prison and documented their descent into authoritarian disaster and psychological torture. While each participant originally gave consent; they could not opt out once inside, essentially codifying confinement as a legitimate research method. As an ambassador of that university, our IRB team made clear, we had, an additional responsibility to uphold the ethics of research.
As a Jew, too, I have always taken such things seriously. It is not difficult to find a halakhic or moral basis for the ethics of how one should treat another entrusted into their care. After all, in what is perhaps the most troublesome demographic study in Jewish history, King David’s failure to exercise the appropriate methodological rigor in his census (according to the Radak and Abarbanel, at least) and G-d sends a plague in response (Samuel II: 24). While that incident may have been a relatively long-time ago, as a community, I think we need to consider two significant events that occurred this past year.
The first was that 2018 became the year of data privacy. Facebook, Google, and large tech companies left and right came under intense scrutiny for their casual use of participant information and, in some cases, were sued for being in breach of Europe’s General Data Protection Regulation (GDPR) laws. The United States, Canada, and dozens of other countries are increasingly advancing the legal rights of users to their data. Nonprofit organizations are unexceptional in this regard, except, perhaps, in their capacity, or lack thereof, to address such issues. Hard questions must be asked about how the Jewish community trades in participant data, who has a right to it, and how we can grow our ability to even track it all.
The second is that the premiere of the acclaimed and award-winning documentary film, Three Identical Strangers, gave the established Jewish community its own horrific origin story for the treatment of human subjects in research. What begins as a feel-good movie about three, identical children separated at birth finding each other in college, evolves into a dark history of the secretive research projects of the Child Development Center on twins and triplets sponsored by the Jewish Board of Guardians (now the Jewish Board of Family and Children’s Services), in conjunction with the Louise Wise Adoption Services. The ultimate fall-out of this research project, the absence of one of the brothers, served as a suspenseful and growing presence in the film’s subjects until the revelation that he had committed suicide. Kept ignorant by the researchers, whose archives remain protected by Jewish communal agencies, these participants still appear to struggle with the psychological effects of the experiment.
We must learn from these and move forward.
At the new Orthodox Union Center for Communal Research, we have made our ethical conduct – how we steward our participant’s information and how we ensure oversight for our research projects – a top priority. All our research is now subject to the supervision of our newly engaged IRB firm, the New England Institutional Review Board. Our internal evaluative efforts are overseen by our newly appointed Director of Participant Privacy. Transparency must be at the heart of our endeavors for the sake of quality research and for our participants.
Further, over the past year, the Orthodox Union has taken important steps to protect the privacy of our participants: restricting access to information, conforming to the highest standards of data usage, and migrating all personal information to encrypted servers. We aim to hold ourselves to the highest standards and achieve GDPR compliance by the end of this year and we are well on our way to that goal.
Finally, we will be working toward educating every single one of our partnering institutions – from federations to foundations to third-party agencies – about these policies. Please stay tuned and in touch for a series of articles, case studies, and webinars on the subject. To support the Jewish people in our data-driven age, we must learn from the past as we take steps to enhancing our future.
Matt Williams is the Director of the Orthodox Union’s Center for Communal Research. You can learn more about the Center at research.ou.org.