The ethics of cancer research and how it affects you.

By Melissa Weber

We’ve done a number of articles in past issues about the importance of clinical trials, particularly having access to potentially better therapy than the current standard of care. Last year, we even devoted a 12-page patient guide to the topic, covering the nuts and bolts of clinical trials along with how to find and enroll in one. But at a recent meeting of oncologists, I realized the other side to clinical trials that curiously seems to get left out of the discussion—our own articles included—is one even doctors have a hard time agreeing on.

In Dallas last September, almost 300 oncologists and researchers gathered for the Annual Community Oncology Research Forum held by US Oncology. Most of the sessions focused on the latest in cancer research and treatment, but one presentation, titled “Ethics of Phase I Clinical Trials,” really got my attention.

I listened to Steven Joffe, MD, of the Dana-Farber Cancer Institute, talk about the purpose of early-phase clinical trials—and the widespread misperception among patients that these trials are meant to help them live longer. For nearly a half-hour, Dr. Joffe worked to convince his fellow doctors to do a better job helping patients understand the real purpose of clinical testing, which, based on his own research, delivers too many doses of false hope.

Following Dr. Joffe’s lecture, the ensuing question-and-answer period led a handful of physicians to voice their concerns about recommending phase I trials to their patients. (Phase I trials evaluate how a new compound should be given (oral or injected), how often it should be administered, and the most effective dose with the fewest side effects.) Since doctors are charged with providing a patient with the best care, some in attendance thought the unknowns of phase I research too troublesome to overlook for the sake of science. Others, meanwhile, defended the necessity to advance research and save the lives of future patients.

In the end, neither side seemed particularly swayed by the other, and the debate only briefly touched on the complicated realities of human testing. So, we’re picking up where the discussions left off with Heather L. Van Epps’s “In Whose Best Interest?” Certainly, we’re beyond the “guinea pig” debate thanks to today’s informed patient. The new discussion is how intersecting interests—those of the patient, researcher, and drug company—are moving research forward.

Shifting gears, I had an unexpected encounter on my flight to Las Vegas in late April to present CURE’s Extraordinary Healer Award for Oncology Nursing. Shortly before takeoff, I struck up a conversation with a young man whose father had a rare type of leukemia. Turned out that, a number of years ago, his dad was treated at M.D. Anderson Cancer Center in Houston.

Keep in mind that as he spoke, he had no idea why I was headed to Vegas. That made what he said next so surprising—about how nurses made his father’s months in the hospital bearable. He grew more and more animated as he spoke about the time these nurses carved out for his father, who’s now in remission, and how they got to know his family. Sitting next to him, I could feel his admiration and appreciation.

When I made my big reveal and told him about the award CURE would hand out in a few hours, he asked me to deliver a message to the crowd: “Thank you.”

I did. More than 500 nurses heard me tell this story at the Extraordinary Healer Award ceremony, where we announced Brian Elliott, of Moultrie, Georgia, as the winner. This issue's Readers' Forum features essays from two finalists, and the full list of nominees can be found here. In upcoming issues, watch for details on the 2008 Extraordinary Healer Award for Oncology Nursing that honors, as one essayist put it, “my secret weapon against the greatest battle of my life.”

Lastly, you’ll notice a new addition to our masthead, as we welcome editor-in-chief Debu Tripathy, MD, formerly a professor of medicine and director of the Komen/University of Texas Southwestern Breast Cancer Research Program in Dallas. Welcome aboard.

Melissa Weber
Editorial Director & Managing Editor