By Sylvia Baedorf Kassis, MPH, PRIM&R Blog Squad
PRIM&R is pleased to bring you blog posts from the PRIM&R Blog Squad during the 2010 Advancing Ethical Research Conference. The PRIM&R Blog Squad will be blogging every day from the conference, so continue to check back for updates.
On my flight from Boston to San Diego for the 2010 AER Conference, I listened to a podcast of the National Public Radio program Being, hosted by Krista Tippett. In October 2009, Tippett interviewed researcher Doris Taylor about her embryonic stem cell research in which she brought the heart of a dead animal back to life. While such an accomplishment could have tremendous implications for the field of human organ transplantation, it also raises questions about the ethics of such research.
Taylor argued that developing a more thoughtful vocabulary related to stem cell research could have minimized the surrounding controversy. In her opinion, embryonic stem cell research has erroneously been linked to abortion. She explained that the fertilized eggs from which the stem cells are derived will never be implanted for in vitro fertilization, and are eventually discarded anyway. The misinterpretation of the definition of embryonic stem cell research, it seems, may be preventing the field from advancing.
Whether you agree with Taylor or not, her plea struck me because so much of what we do in our field is dependent on the existence of definitions. I can’t think of ever having a serious discussion about research that didn’t result in referring to a regulation or a guidance for a specific definition.
But what happens when we don’t all agree?
A fellow conference attendee mentioned how amazing it is that people can assign such different meaning to a given definition. Her comment got me thinking about how vital definitions are to the entire research enterprise.
I can’t count how many times I have found myself in lively discussions about whether a proposal even meets the definition of research. I’ve questioned whether the de-identified specimens in a proposed repository are coded or anonymous. I’ve wondered if a study meets the definition of minimal risk and would be impracticable without a waiver of informed consent. These issues, and issues from your own experience, are all related to the interpretation of definitions.
At face value, different interpretations of a definition can be a fun brain teaser or a minor annoyance. The reality, though, is that such a debate can set off a cascade of delays that affect not only the research study in particular, but scientific advancement at large. By attending AER, I can’t help but think that, at the very least, we’re all in some way united in a four-day quest for a common understanding of the regulations and guidances we uphold every day. That seems like a giant step in the right direction.
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