NIH grant to help PSU professor study ethics of gene-editing trials
Author: Cristina Rojas, College of Liberal Arts and Sciences
Posted: September 27, 2018

Gene-editing technology is rapidly advancing, opening up the possibility that one day embryos could be altered so that babies don't inherit a disease that runs in the family. That day is still a long way away, but a Portland State University professor will begin tackling the ethical, legal and social questions that will inevitably arise with future clinical trials of this technology.

Bryan Cwik, a professor of philosophy and University Studies in PSU's College of Liberal Arts and Sciences, was awarded a two-year, $100,000 grant from the National Institutes of Health. The grant will allow him to have a reduced teaching load as well as spend a term at University of California San Diego's Institute for Practical Ethics.

Since germline gene editing would, in theory, permanently alter the DNA of every cell so any changes would be passed on from generation to generation, many professional organizations and committees have said intergenerational monitoring — or long-term follow-up monitoring of not just the participants in the original trial but their children and even grandchildren — may be necessary.

Some issues that could arise will be requiring consent and participation from multiple generations, giving researchers access to key medical data for entire families over several decades and notifying descendants about any serious health problems that might have been the result of the original experiment.

"Whenever you have something like a new situation or medical technology that raises ethical questions, it deserves scrutiny," Cwik said. "If none of these questions are discussed or thought about or dealt with now — you could end up with a very bad situation."

Cwik says his research will also help to better inform his classes since many of his students are pre-health majors.

"They may be professionals working in the medical field when this kind of technology becomes possible," he said. "And even if it isn't, the issues raised are going to be ones many of them will face in their day-to-day professional lives."