Thursday, July 2, 2015

If the Field Fits, Work in it: An Interview with Edith Paal

By Nora Murphy, membership assistant

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 Edith Paal, MSJ, MPH, CHRC, CIP, IRB program manager at the University of Arkansas for Medical Sciences.

Nora Murphy (NM): When and why did you join the field?
Edith Paal (EP): I joined the field in 2003 after working as a journalist and scientific writer. I worked for nine years as an auditor, then as an auditing manager in the University of Arkansas for Medical Sciences Research Compliance Office, focusing on human subject protections, before joining our institutional review board staff in 2012 as a program manager. I was looking for an area that would allow me to apply my interests in science, ethics and regulatory matters, and writing/editing/communication, and this field has been a great fit in that regard.

NM: What is one tool you use every day that you could not do your job without?
EP: My willingness to admit that I don’t know all the answers, and to go find the answer, or at least an answer that we can support from a regulatory and ethical standpoint (because there are often multiple possible answers).

NM: What’s one specific challenge that you have faced during your career, and how did you overcome it? 
EP: Too many of our investigators don’t know about the research-related services and resources available to them on campus. We are still working on overcoming this challenge by being as accessible as possible to the research community through educational offerings, blogs, and encouraging people to get in touch and stop by whenever they have a question. Being responsive to questions and concerns has also helped.

NM: What is one thing you wish the general public knew about human subjects and animal research?
EP: The stories that make the news, describing injuries to subjects or maltreatment of animals due to major ethical lapses, are the outliers. Most people don’t hear about the research that is being done ethically, where no human subjects are injured, and animal welfare and enrichment are high priorities because so many people work hard every day to ensure ethical and regulatory requirements are being met.

NM: What is something you know now that you wish someone had told you when you first entered this field? 
EP: It’s really worth it to take the time to deliver bad news in a way that emphasizes that, while we may have a problem, here’s how we can fix it.

NM: What motivates you to maintain your commitment to advancing ethical research?
EP: I am motivated by, and grateful for, the opportunities provided by my work at an academic medical center. I greatly enjoy the variety of research proposals that cross my desk, and the variety of investigators I get to work with—everyone from students doing projects because they are required to do so, to seasoned investigators who are experts in their fields and for whom research has been a cornerstone of their careers.

NM: How has membership in PRIM&R’s community of research ethics professionals helped you to advance in your career or do your job better?
EP: Attending the annual Advancing Ethical Research (AER) Conference whenever possible has been very helpful to me. I’ve found it beneficial to learn that other institutions and human research professionals struggle with the same issues that we do, and hearing how they’ve addressed them has helped me find solutions applicable to our workplace.

Thank you for being a member of PRIM&R, Edith! We’re glad to hear that your experiences at the AER Conference have helped you find solutions applicable to your institution, and we hope to see you in Boston later this year. 

Are you joining us in Boston in November? Learn more about the SBER and AER Conferences.

If you’re not part of the PRIM&R member community, learn more about becoming a PRIM&R member, and the benefits that PRIM&R membership provides.

Tuesday, June 30, 2015

Risk of Groupthink

Collaborative discussions are not unique to the research ethics community. One can assume that every day, all over the world, there are many groups sitting in rooms trying to come to consensus on issues.

Given our near-universal constraint of time in a day, and the range of knowledge in any given room, these discussions can—often inadvertently—lean towards “groupthink,” where the attempt is made to minimize conflict, and in doing so reach a consensus without considering all viewpoints. Think of it as one of those “everyone agree?…[brief pause]…good, moving on...” situations.

When this happens, some in the group may feel uncomfortable dissenting, and a decision is made without considering all opinions. In this excerpt from People and Perspectives, Christy Rentmeester, PhD, associate professor at the Center for Health Policy and Ethics at Creighton University School of Medicine, discussed the risks that arise with groupthink:
“The risk of groupthink is that dissent is silenced. [If the person who disagrees] is not free to speak up or tell why they think differently, or they are never asked why they think differently, your deliberative process is broken.”
Dr. Rentmeester points out that groupthink is particularly dangerous for IRBs. As she puts it, the “quality of your deliberative process is directly related to how inclusive it is.” There’s always a risk that the process can be intimidating, particularly for those who may not feel they have the power to speak up.
“If you have questions about what you’ve read…you have to have space and you have to have courage to be able to ask those questions. And asking those questions means you are exposing your own ignorance…If you have that question, there very well might be other members of the committee who have that question.”
Watch the full interview with Dr. Rentmeester on People and Perspectives.

Do you have any good methods for ensuring your IRB stays away from, or is aware of groupthink? Have you felt uncomfortable speaking up during a meeting, but you found a method to do so? Share your thoughts in the comments below.

Friday, June 26, 2015

Promoting Animal Welfare through Ethical Service: Servant Leadership and the IACUC

By Angela Craig, DVM, lab animal veterinarian and institutional animal care and use committee (IACUC) member at the University of Minnesota

Have you ever had this experience? You learn something new, such as an interesting concept or novel word, and suddenly that concept or word comes up repeatedly in a variety of situations over the next few weeks or months. Whether it is a coincidence or just your mind recognizing something that is now familiar, it is an interesting phenomenon.

I’ve recently had this experience with the concept of ‘servant leadership,’ which I was introduced to while participating in a mentorship program for veterinary students. Since then, I feel like I have repeatedly been made aware of how servant leadership can positively impact individuals and organizations.

Servant leadership is not a new philosophy, but Robert K. Greenleaf is credited with describing the modern tenets in an essay he wrote in 1970 called The Servant as Leader. While not every servant leadership concept aligns perfectly with the way an IACUC should function, the basis could be used to promote a healthy and functional committee. At its core, servant leadership is about serving others before oneself, promoting the growth and development of others, sharing power, and creating a better society. According to Larry C. Spears, servant leaders listen, have empathy, are good stewards, build community, and commit to the growth of people. Kent M. Keith would add that they practice self-reflection. These concepts lend themselves easily to the community of individuals that come together to form an IACUC.

IACUCs must have specific members to be appropriately constituted. Without each member’s contribution, the group would lack the richness of experience, knowledge, and perspective necessary to promote scientific growth while ensuring animal well-being. For this reason, it is easy to see how the leaders and facilitators of these committees, the IACUC chairs, could employ servant leadership to make the committee truly strong and engaged. They can make the decision to enhance growth by ensuring thorough training and development of each member, and by encouraging active participation in discussion and committee activities. They can use their voices, not to dictate, but to encourage others to lend their individual voices to every discussion. In turn, these members, who can easily identify their key role within the committee, are equally confident in leading others to promote the culture necessary for a high quality animal care and use program.

An important way for IACUC members to practice servant leadership is to provide guidance to investigators. Thoughtful protocol review and constructive feedback allow members to listen to the needs of investigators and suggest practical refinements. During lab visits members can help research staff to achieve high-quality results by promoting best practices in animal use and sharing helpful tips for remaining in compliance. In-depth mentorship may be necessary for new labs or those struggling with complex issues. Continuing education opportunities provided by the IACUC can help investigators keep their teams updated about expectations for responsible research conduct. In each of these ways, the member is promoting the growth and development of others within the organization. They empower them to take action to improve the program at every level.

By virtue of its role, the IACUC inherently leads others within the animal care and use program. The decisions made by the committee impact the actions and conduct of the local scientific community. If the leadership style of the committee emphasizes service, integrity, and stewardship, it inspires others to lead in the same way. Ultimately, by adhering to servant leadership principles, and promoting them in others, an IACUC can assure a direct positive impact for the animals within their organization.

Thursday, June 25, 2015

#TBT: Looking Back at PRIM&R’s 2011 SBER Conference

It’s been four years since PRIM&R’s last Social, Behavioral, and Educational Research (SBER) Conference and, this November, we will host the 2015 SBER Conference in Boston, MA. As we get ready for this year’s event, let’s look back at topics discussed in 2011 to see how they have transformed and evolved over the years.

Issues around data sharing and privacy have been widely discussed in our community, but they’re not new; even back at the 2011 SBER Conference, these issues were important themes:

In his keynote address, Alex (Sandy) Pentland, PhD, Toshiba professor of media arts and sciences at Massachusetts Institute of Technology, discussed personal data and the movement into a data-driven world. He concluded that current privacy regulations need to be adjusted to deal with this data and its place in the research process. Now, in 2015, this discussion continues and concerns remain about data and privacy, especially since regulations have not yet caught up with this changing landscape.


Members: watch the full video on PRIM&R’s Knowledge Center. Not a member? Join today

In a panel titled, “Technology, Research, and Implications for Privacy/Confidentiality,” Latanya Sweeney, PhD, professor of government and technology in residence at Carnegie Mellon University, provided context around the concept of de-identification of genetic data. Dr. Sweeney noted that, in 2011, we were still trying to get a handle on the rules surrounding de-identification of genetic material.


Members: watch full video on PRIM&R’s Knowledge Center. Not a member? Join today.

Conversations around these issues have continued, but four years later, the field still grapples with the changing nature of identification, de-identification, and re-identification of data; privacy and confidentiality, and how they are defined in today’s research landscape; how institutional review boards (IRBs) think about these definitions as they apply to their work; and how emerging methods and techniques contribute to these changing definitions. During this year’s SBER Conference, expert facilitators will talk about these subjects during the following sessions:
Plenary Session: Emerging Areas in SBER – During this session, speakers will discuss privacy as it relates to research with social media, mhealth, and the evolving definition of privacy in the research landscape.
C6: Panel Follow-Up: What Do We Need to Do With This? Reviewing SBER Studies that Involve Emerging Methods and Technologies – This session is a follow up to the Emerging Areas plenary session.
Changing Concepts of Anonymity, Confidentiality, and Privacy in SBER (A2, Basic and A4, Advanced) – During these sessions, faculty will discuss the changing definitions of these concepts and will share examples of de- and re-identification of data in SBER.
And for those SBER attendees staying on to continue their SBER-related learning, several related sessions are planned during the 2015 Advancing Ethical Research Conference as well:
Panel III: Moving Targets: The Challenges of Responsible Mobile Health (mHealth) Research will include discussion about privacy as it relates to mHealth and the data being gathered from those technologies 
A22: Ethical Issues in Research with Big Data - similar to the above panel, except this session will focus on big data and issues of public trust, privacy, identifiability of individuals or groups, and protection of public interest. 
B24: Data Streams, Behavioral Research, and Public Health – similar to the above sessions, but as it relates to SBER and public health. 
Panel IV: Picked Out of a Crowd: Privacy and Re-Identification Research – this panel will cover the reverse issue: protocols are designed to explore the limits of existing privacy and confidentiality protections; in particular, this panel will cover research attempting to re-identify supposedly de-identified data sets. 
C16: When it Happens to You: Identifying and Managing Privacy Breaches in Research – this session will inform attendees how to manage breaches in privacy.
Data sharing and privacy are just two of the topics that will be discussed at the 2015 SBER Conference on November 12, 2015 in Boston. Registration is now open! View the conference schedule here .

Wednesday, June 24, 2015

2015 IACUC Conference: Say Anything, We’re Listening

By Maeve Luthin, professional development manager

PRIM&R’s 2015 Institutional Animal Care and Use Committee (IACUC) Conference brought over 600 individuals from around the world together, in Boston, MA and online through the Virtual Meeting. Approximately 61% of these attendees provided feedback about the conference by completing evaluations.

Better Off Read: We saw a spike in the number of respondents who rated the educational materials and handouts for this program as either excellent or very good. This appears to be the result of a combination of two factors: a record number of faculty members shared their slide decks and session materials in advance of the program, and PRIM&R disseminated these resources through a new tool: the interactive schedule, which allowed attendees to download this information directly from the online conference schedule.

Agents of Yield: Respondents enthusiastically received the three keynote speakers, all of whom have led groundbreaking research: Darin S. Carroll, who spoke about his research in emerging zoonoses, including research on monkey pox; David K. Meyerholtz, who spoke about using novel animal models to further his research on cystic fibrosis; and Frans B. M. de Waal, who spoke about primate social intelligence. In the future, however, respondents indicated that they would like to see at least one general session address issues related to IACUC administration or research ethics. They also would like to see those who deliver talks involving translational medicine explain the intersection of their work with those of IACUCs.

Lions and Tigers and Bears, Oh My! Respondents appreciated the inclusion of sessions on field studies, even if they do not encounter these protocols on a day-to-day basis. “Wildlife protocols don't often come up, but this highlighted how important it is to have them. Hearing about wildlife crises was scary but the experience was also motivating,” one evaluation respondent noted.

Please Use as Directed: Respondents requested that program titles and descriptors be more indicative of the content that will be presented during the sessions, and include such information as the specific learning level (e.g., beginner, intermediate, advanced), and what regulations will be discussed.

Thank you to everyone who took time to share their thoughts about the conference! This feedback—the rest of the conference evaluation results—will be passed onto the 2016 IACUC Conference Planning Committee. That meeting will be held March 30-April 2 in Bellevue, WA. Remember to share your 2016 program ideas by submitting a poster abstract or through the call for session proposals by October 2, 2015. Learn more here.

If you attended the 2015 IACUC Conference, you can view the conference proceedings, using the access key you received prior to the meeting. If you have questions, please contact us.