Thoughts from the 2016 PRIM&R Advancing Ethical Research Conference

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The CUNY team at PRIM&R Advancing Ethical Research 2016

Every year, Public Responsibility in Medicine and Research (PRIM&R), a professional organization dedicated to promoting research ethics and supporting research professionals, hosts a conference titled “Advancing Ethical Research.” This year, multiple CUNY representatives traveled to Anaheim to attend the conference. We asked them to share what they believed to be their most important “take-aways from the event.

 

“The PRIM&R 2016 Advancing Ethical Research Conference was extremely enlightening. Parent Project Muscular Dystrophy’s CEO Pat Furlong gave a very compassionate speech regarding children who are clinical trial subjects, which I will never forget. Furlong’s talk not only advocated for children’s rights as test subjects, but showed us how emotional and overwhelming this process is for them and for their families. In the words of Pat Furlong, always remember that when interacting with subjects ‘…words matter…’.”

  • Janet Echeverry, HRPP Coordinator

 

“The best part of the PRIM&R AER experience for me was networking and discussing common problems and potential solutions with IRB members at both institutions like and different than CUNY. The conference allowed me to explore different ways of addressing regular ethical concerns in social, behavioral and educational research, specifically research involving social networking and social media, which we are seeing more and more at CUNY.”

  • Nicholas Grosskopf, IRB Chair

 

“1. Research on illegal behaviors is fraught with ethical issues. IRB’s need to think through how to protect study participants.

2. Consent to be in a study is an ongoing process, not a one-time signing of a form.

3. Study participants with lower literacy may sign our ‘legalese’ consent forms without really understanding them. Why not make vignette videos to make the consent meaningful to people who may not get their information from reading?

4. We need to think about vulnerability in terms of social and structural contexts, not just in terms of individuals.”

  • Stacy Plichta, IRB Member

 

As a first time PRIMR(er) I was overwhelmed by the vastness of the conference as a whole. Every workshop was facilitated by experts who spoke with urgency and dedication. The lecture that had the most impact for me was “Echoes of Tuskeegee in 2016.” This particular lecture reinforced my responsibility as a reviewer and helped to frame my overarching goal in the review process, to protect those most vulnerable.

  • Anissa Moody, Expedited Reviewer

 

“PRIM&R ’16 clarified the stakes and the stakeholders on proposals to update the Common Rule [federal regulations].  [The Office for Human Research Protection‘s] sweeping update proposal, ‘NPRM’ [or “Notice to Proposed Rule Making”], has been widely panned. The National Academy of Sciences argues that these major Common Rule revisions [should] not be guided by NPRM, but rather by the findings of a proposed second (‘[The Belmont Report] 2.0’) research ethics commission.”

  • Fr. David Kossey, IRB Member
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