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Name: Dr. Deborah Barnbaum

Title: Professor of Philosophy

What is your expertise? What are your research interests?

My expertise is in medical ethics; my research interests are in the ethics of clinical research studies.

How long have you worked at 91²Ö¿â?

Since 1997; I have been at KSU for 23 years.

When do you first remember hearing about COVID-19 or the "coronavirus?" Did you have any sense at all that it would have as large an impact as it has on our day-to-day life? 

As part of my research I subscribe to the table of contents of three medical journals on a weekly basis. I started noticing the ramp-up of discussion of the "novel coronavirus" in two of those journals in January. I flew to Washington DC for a grant review panel at the end of January and packed masks in my suitcase in case I needed them on the plane or the airport. I still have them in my suitcase; that was the last trip I went on before the shut-down. Despite reading the journals and packing those masks early on I had no idea the impact would be as wide-reaching as this.

Is there any experience you have had in your life up until now that compares with what we all are currently navigating? If so, what was it?

Some of the emotional experiences I liken to mourning the loss of a loved one. There is a sense of loss, and a sense of emptiness in something ineffable missing. But I also recognize that I'm fortunate in that there are so many people whose lives have changed more dramatically than mine.

How has your day-to-day life changed? What does your new "routine" look like now?

I spend a lot of time at home with my spouse. We get along extremely well, and very much enjoy each other's company. We used to go to restaurants far more often, and spent several summer weekends at Blossom concerts. I see friends less often, and at a responsible "social distance," outdoors on our deck. One of my hobbies is throwing parties for friends, so that has been curtailed. I miss those social experiences.

COVID-19 and our collective response is one of the most interdisciplinary phenomena many of us have seen/experienced. How would you describe how your discipline/research interests/expertise contributes a valuable perspective to our better understanding and responding to COVID-19? 

I serve on several data safety monitoring committees overseeing clinical trials sponsored by both the NIH"s National Eye Institute (NEI) and National Heart Lung and Blood Institute (NHLBI). I'm the sole ethicist on each of these panels, serving alongside clinicians and bio-statisticians from universities and hospitals across the country.

Monitoring clinical trials to make sure that the benefits outweigh the risks during the course of the study is an inherently interdisciplinary activity. It takes expertise across many areas -- medicine, statistics, and ethics -- to analyze the balance between the benefits and risks of a new treatment.

With COVID-19 the balance of risks and benefits in many clinical trials has changed. Participants who weren't vulnerable before may be more vulnerable. The mere act of going in to an appointment so that data is collected, or adverse events are tallied, now entails greater risk. Some drugs on therapies that were being tested for other ailments are now being re-purposed for COVID. And some studies had to be put on hold because of limits at research sites. Our committees grappled with all of these issues, and more.

If you had to embark upon a scholarly project (e.g., research, a new course) right now related to COVID-19 and our collective response, what would that look like?

The ways in which healthcare and medical research will change as a result of COVID-19 are not yet fully understood. Last semester my Health Care Ethics class integrated material from the pandemic, and I expect that the course will change further in the coming semester.

Research ethics is awash in COVID concerns. Every time you see a story in the mainstream press about vaccine trials, or studies of treatments that have succeeded or failed, there is a back-story of research participants who gave of themselves to make that research happen. Without research subjects who volunteer their time, and put their health on the line, science doesn't move forward. It is important that science is done well methodologically, but it also needs to be done ethically. Now that so much hinges on the speedy and and rigorous execution of clinical trials research ethics is inescapable.

I'll be interested in researching if the balance of principles that shapes our view of what counts as ethical research has changed as a result of the pandemic.

What other discipline (even without any expertise or knowledge in that area) could you see helpfully complementing yours in pursuit of your new COVID-19 project?

Narrative ethics is the study of people's stories in shaping ethical concerns. I'd like to see a wider collaboration with individuals who specialize in narrative -- both in English and communication -- to inform these questions. The voices of research participants aren't heard enough.