Bioethics consultancies: the way of the future?

Xavier Symons
25 October 2014
Reproduced with Permission

Informal bioethics consulting has been common in many countries for decades. But ethicists in the US are attempting to formalise the practice, creating independent 'ethics consulting' services for healthcare professionals and scientists.

Ethics committees such as institutional review boards (IRBs) tend to have a narrow focus and their guidance is often binding on healthcare professionals.

Ethical consulting services can provide important advice that goes beyond the jurisdiction of IRBs. They provide "an open space for talking about research ethics in a way that is not driven by the regulatory environment", says Marion Danis, chief of the bioethics consultation service at NIH Clinical Center, a research hospital in Bethesda, Maryland. The can also provide valuable 'second opinions' to IRB's, Danis said.

Benjamin Wilfond, director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital in Washington, has set up the Clinical Research Ethics Consultation Collaborative, a group of around 35 bioethicists who hope to keep improving the consultation service model, even without NIH support.

"There's energy behind continuing what we started," says Holly Taylor, a research ethicist at the Johns Hopkins Berman Institute of Bioethics in Baltimore, Maryland, and a member of the group.

University of Minnesota bioethicist Steven Miles is very enthusiastic about the initiatives. "For innovative research designs, you need some independent person to say, 'Well, let's step back and think about this not just from the standpoint of do the regulations permit it, but does it fulfil the spirit of what people want done with the public research enterprise?'.