The thought of genomics research fills us with both wonder (Think of all the interesting possibilities!) and fear (Think of all the new ethical and identifiability concerns!). Of particular note is the changing concept of “identifiability.” Rapid knowledge and technological advances mean genomic data that’s not identifiable now may be identifiable someday soon. And genetic information is, by its nature, potentially sensitive and private.
A upcoming Public Responsibility in Medicine & Research (PRIM&R) webinar will address some of these issues. The UAMS Office of Research Compliance will host this webinar at noon Thursday, May 10, in the Rahn Building (Ed II, where the College of Public Health is), room G137.
From PRIM&R’s webinar announcement:
Breakthroughs in genomics research and technology hold the potential for significant and wide-reaching clinical, scientific, and societal benefit. As genetic sequencing and testing become increasingly accessible and prevalent, so too has the ability to share vast amounts of genomic information. Such advances have disrupted traditional notions of identifiability and have introduced new considerations for IRBs, researchers, and research subjects regarding the attendant risks and benefits presented by genomics research. A primary example of the effort to acknowledge the quickly evolving nature of genomics research is the revised Common Rule, which calls for periodic assessments of identifiability standards for information and biospecimens—meaning the current definitions of “human subject” and “identifiable” will be re-evaluated in the coming years.
IRBs and researchers should employ forward-thinking strategies in order to be prepared for these potential changes, and for the accompanying shifts in risk-benefit assessment that may come as a result. At the same time, it is critical that stakeholders assess risk within a realistic, evidence-based framework, and that concerns about privacy breaches, re-identification, and bad actors, are not overestimated.
We encourage our IRB members, IRB office staff, and investigators and study teams who work in research fields related to genomics to attend.
Certified research specialist certificate holders or seekers, you get 1.5 CRS elective credit hours for attending. Certified IRB Professionals (CIP holders) can also earn 1.5 continuing education hours.