By Marley Thrasher, director of education and professional development
Welcome to another installment of our featured member interviews where we introduce you to our members—individuals who work to advance ethical research on a daily basis. Please read on to learn more about their professional experiences, how PRIM&R membership helps connect them to a larger community, and what goes on behind-the-scenes in their lives.
Today we'd like to introduce you to Rachel Zand, PhD, the newest member of PRIM&R's Education Committee, who is the director of the office of research ethics at the University of Toronto.
Marley Thrasher (MT): When and why did you join the field?
Rachel Zand (RZ): I fell into the field of research ethics in 2002. I had ended a post-doctoral fellowship early after having my first child and realized that academia was not the path for me. Recognizing that my experience in conducting human research would be an asset, I applied for the health sciences ethics review officer at the University of Toronto. I got the job and I have enjoyed working in the field ever since.
MT: What's one specific challenge that you have faced during your career, and how did you overcome it?
RZ: In 2009, due to the economic difficulties of the previous fall, my office lost two positions: one coordinator, and one research ethics board (REB) manager. The workload didn't decrease by any means, so it was a particular challenge figuring out how to handle the deficit. I had to restructure the office in terms of responsibilities and take on a dual role for a period of time of both director and REB manager. While it wasn't an ideal situation, it helped me to focus on the most important aspects of both roles and taught me perseverance.
MT: What is one thing you wish the general public knew about human subjects research?
RZ: I don't think the general public is even aware of the existence of institutional review boards (IRBs)/REBs and the process that research studies undergo between being developed and starting recruitment. I think the fundamental understanding of research ethics and ethics review is essential in winning and maintaining public trust. Without that trust, the research enterprise falters, delaying the necessary work to learn, understand, and improve our physical, mental, and emotional health.
MT: What is an example of a lesson you had to learn the hard way?
RZ: The hardest part, when I first entered the field, was to recognize the various constituencies that are involved in the human research protection program (HRPP) system (researchers, REB members, departmental chairs, deans, students, research staff, administrators), how best to work with each constituency separately, and, more importantly, interweave their roles. Creating a culture of research ethics requires that all stakeholders within the institution recognize the importance of this common goal and work together to make the system function. Developing and executing the strategies to do this was something I learned the hard way.
MT: What changes in the research field most concern you? What changes are you encouraged by?
RZ: The "democratization" of research both concerns and encourages me. Society now plays a big role in generating data (whether they know it or not), influencing what researchers study, funding research, and even conducting research themselves (crowdsourcing, citizen research). While in many ways these new changes have positive impact on facilitating research, I am concerned that evidenced-based theories requiring fundamental research may lose out to what society sees as being trendy or interesting.
MT: What motivates you to maintain your commitment to advancing ethical research?
RZ: I can see how the culture of research ethics has taken root and flourished both at the University of Toronto and globally. Research ethics, integrity, and responsible conduct were barely topics of discussion a decade ago. I feel that I am a part of a greater process that has brought these terms into everyday conversations among researchers and administrators, and believe that we are making a difference in ensuring that human subjects research is done ethically and with integrity.
MT: What interested you about serving on PRIM&R's Education Committee?
RZ: I believe that providing education in ways that are informative, comprehensive, interesting, and inspiring is essential to maintaining the professionalism of all roles within the HRPP. I also feel that because I am Canadian, and have provided education as part of system that is principle- and guidelines-based (not rule- or regulation-based), my perspective could provide some additional insights to the Education Committee.
MT: Have there been any PRIM&R events or talks that you have attended that have made a significant impact on your approach to your work? If so, what were they and how did they influence you?
RZ: One of the best PRIM&R talks I have ever heard (and I have experienced many) was a keynote by Atul Gawande at the 2013 AER Conference on the importance of healthcare systems and how a system that works well can literally save lives. This brought home to me the importance of the HRPP system functioning well, with all parts understanding their jobs and communicating efficiently. Reviewing the system frequently is essential to identifying gaps and unnecessary redundancies, and requires that the system be nimble enough to correct these quickly.
MT: How has membership in PRIM&R's community of research ethics professionals helped you to advance in your career or do your job better?
RZ: Being at the largest university in Canada, it is difficult to find many Canadian peers that have similar issues and concerns that we do, from a volume and workload perspective. PRIM&R has enabled me to network with other larger institutions that have challenges similar to ours. Through my participation on the 2014 Advancing Ethical Research Conference Poster Abstract Subcommittee, I have also been able to see what programmatic activities other institutions have engaged in. Many of these are novel and practical and have inspired me to improve the HRPP at my institution.
MT: What other programs or research initiatives are you involved with outside of your work with University of Toronto?
RZ: I have been a member of the Canadian Association of Research Ethics Boards (CAREB) for 12 years, and a director of its board since 2007. I have been involved in professional development, public affairs, conference planning and have served as treasurer, vice-president, and president. I am now starting a two-year term as past-president, while I continue to chair the steering committee on research ethics professional certification.
MT: What challenges do you see ahead for human subjects research?
RZ: I think that Big Data has started and will continue to challenge us in our understanding of some of the most important principles of research ethics, including autonomy, privacy and confidentiality, free and informed consent, and justice. As ways of collecting, analyzing, re-analyzing, linking, retaining, storing, de-identifying, and re-identifying data change, IRBs/REBs will have significant challenges in terms of how these principles are evaluated and applied. I am optimistic that we will be able to solve such challenges and recognize that we will need to bring in expertise that research ethics has not typically involved before – computer scientists, engineers, and librarians.
Thank you for joining the Education Committee, Rachel, we look forward to working with you!
If you'd like to learn more about becoming a member, please visit our website today.