Connecting Research and Democracy

Fulbright Fellow Marcin Waligóra leads a multidisciplinary team examining clinical trial safety for the youngest oncology patients
Pictured here at the Grand Canyon, Marcin Waligóra completed a year as a Fulbright Visiting Scholar at the Center for Bioethics at Harvard Medical School.

by LAUREN KAYE

Communist Poland was in the midst of food strikes and political turmoil when Marcin Waligóra was growing up. Along with food shortages and riots, the tumultuous times left the government-controlled school that Waligóra attended underfunded.

A curious and critical child who loved to ask questions, Waligóra eventually decided to study philosophy.

“When I became a teenager, just after communism collapsed, there were not many opportunities to study topics like life science,” said Waligóra. “I wanted to do independent, intellectual work, and without research labs and other resources, philosophy was one of the only ways to do that.”

Now, Waligóra is completing a year as a Fulbright Visiting Scholar at the Center for Bioethics at Harvard Medical School. During his tenure, he analyzed research on the risks and benefits of pediatric oncology trials that may change the way we assess the safety of such trials for children.

 

Democracy in Action

Marcin Waligóra, PhD, earned his master’s and doctoral degrees in philosophy at Jagiellonian University in Krakow, Poland.

Following his graduation, Waligóra worked as an assistant professor in the Department of Philosophy and Bioethics at the medical college there. While teaching a medical ethics course, he realized that scientific data was needed to ground his analysis and establish the merit of his ethical arguments.

“After more than ten years of studying purely theoretical philosophy called phenomenology,” said Waligóra, “I decided that I wanted to find some other way of learning systematically about more practical problems in medical ethics.”

To fully understand how to gather and assess clinical data, he enrolled in a two-year research ethics program funded by the Fogarty International Center. Not only did the course expand his capacity in research ethics, it inspired him to take a more active role in bioethics.

Soon after graduating from the program, he founded REMEDY, the Research Ethics in Medicine Study Group, with the goal of using evidence-based medicine and meta-research to answer questions in bioethics.

The REMEDY team, which he continues to lead, is currently comprised of five individuals, each with a unique area of expertise, including philosophy, neurobiology, biomedical engineering, biostatistics, and public health.

“I want to lead this team in a democratic way,” Waligóra said. “Because we have different backgrounds, we are able to complete advanced analysis on many complex issues. We all learn from each other and I love working alongside such passionate people.”

While Waligóra knew how he wanted to structure the group in his head, selecting REMEDY’s research profiles was a matter of the heart.

An Unlikely Influence

Waligóra first considered the topic of his most recent research analysis, not while teaching or at a formal brainstorming session, but in a pediatrician’s office.

At the time, Waligóra was a new father, bringing his children to their doctor. He sat with his daughter and son as they had their temperatures taken, heart rates checked, and blood drawn.

“During this visit to the pediatrician, my two children were both very aware of the tests being performed on them. Each of them had specific preferences and gave clear and conscious assent—and even sometimes dissent—to various procedures,” said Waligóra.

Witnessing his children’s ability to give assent struck a chord and reminded Waligóra of his initial interest in studying the treatment of vulnerable populations in medicine.

“The experience with my own kids helped me realize that we are often able to accept children’s preferences in medicine,” Waligóra said. “I was inspired to find more systematic data about pediatric care and to develop theory supporting children’s participation in the medical decision-making process.”

The REMEDY team is now examining how initial trials of pediatric medicine and children’s consent intersect. Particularly, REMEDY is considering what regulations and standards should be implemented to ensure the safety and autonomy of young patients.

While in Boston, a hub for biomedical research, Waligóra had his visiting scholar appointment at the Center for Bioethics at Harvard Medical School where he focused primarily on his Fulbright research project, “Children in Phase 1 Cancer Trials: Risk and Social Benefit.” The project involved analyzing meta-data of clinical trials in pediatric oncology to more accurately calculate risks and benefits during different phases of pediatric oncology trials.

In this study, Waligóra and his team investigated how phase I trials for children differed from the same adult trials, examining the accuracy of patient expectations and assessing the ways that current regulations are affecting these ratios.

“Many people expect pediatric oncology trials to be safer than adult trials, that there are equivalent benefits with less risk,” said Waligóra. “But according to our systematic findings, the risks and benefits in pediatric oncology phase I trials are actually very similar to adult trials.”

Waligóra hopes that the results of this research, which were published in PLOS Medicine will prompt a reevaluation of patient communication and consent, and enable pediatric patients and their families to make more informed decisions regarding their medical care.

Culture Shock

The Fulbright exchange with the Center for Bioethics, says Waligóra, not only allowed him to deepen his bioethical expertise and continue his research, it also gave him the opportunity to build professional connections and immerse himself in American culture.

Since first arriving in Boston, Waligóra felt warmly embraced by his new community. “This country and its culture are very inclusive,” Waligóra said. “When people hear my accent, they ask me where I’m from and if I’m going to stay in America. I love that.”

Some aspects of American life, though, took him by surprise.

“When I first arrived in the United States, I was flattered by the number of strangers smiling at me on the street, because in many European cultures, when people smile at you, it is flirtatious,” laughed Waligóra. “I originally thought American women found me to be very handsome, but now I know this is just a part of the welcoming culture here. I was definitely humbled.”

Throughout his fellowship, Waligóra and his family used their time to explore America. Both of his children attended public school in Cambridge. “My son is now fluent in English and my daughter is even speaking with an American accent,” Waligóra said.

Before leaving Boston, the family will embark on a road trip across the U.S., with a final tally of twenty-one states visited throughout the year. His son is documenting the journey via a personal blog.

When Waligóra returns to Poland, he plans to rejoin the rest of the REMEDY team and continue their research. He says he is especially excited to be back at Jagiellonian University and resume teaching bioethics.

"I love getting smart, difficult questions from my students. They all come from different backgrounds—future physicians, midwives, nurses, physiotherapists—so it's interesting to hear each of their perspectives on ethics," said Waligóra. “I’m looking forward to bringing the knowledge I gained while abroad at the Center back home to the classroom.”

Waligóra says he hopes to return to visit the Center in the near future. “Working at the Center this past year was one of the best decisions I’ve ever made, not just professionally, but personally” Waligóra said. “I feel at home here, this has become my culture. These are my people.”