WHEN REBECCA DRESSER LEARNED that she had a squamous cell tumor at the base of her tongue in 2006, she was well-read in the art of delivering bad news to patients facing serious illness. A medical ethics and law professor at Washington University in St. Louis, Dresser had taught aspiring physicians in the medical school about the ethics of navigating difficult conversations. Now she was in the midst of one, receiving a diagnosis that her doctors said carried a 30% to 40% chance of survival.
When Dresser’s doctor offered her the option to participate in a clinical trial as part of her treatment, the ethicist in her felt compelled to do her part to advance scientific knowledge. But the tumor board—a group of physicians and other health care providers from various disciplines that reviews cancer cases to determine the best treatment course—had already recommended a regimen of four chemotherapy agents, including one that had just been approved and wouldn’t be included in the study, followed by chemoradiation. The trial would compare two treatment approaches by randomly assigning patients to one of two groups: One would receive chemoradiation alone, and the other would receive the three chemotherapy drugs followed by chemoradiation.
Dresser mulled over the choices with a gut feeling that the more aggressive treatment would give her a better chance. “Maybe if I went in the trial and tried the less intensive regimen, the side effects wouldn’t be so bad,” she says. “On the other hand, I really wanted to live.” Even so, she was keenly aware that the only reason she had access to the treatment her tumor board recommended was because others had elected to take part in trials.
Talk More About the Book
Through March 24, we will be discussing Silent Partners: Human Subjects and Research Ethics in our online book group.
Ultimately, Dresser turned down the opportunity to participate in the research. In 2012, she wrote an essay about this decision for a book, called Malignant: Medical Ethicists Confront Cancer. The collection of essays, which she edited, included the perspectives of six other medical ethicists who wrote about personal experiences with cancer. In 2016, she published Silent Partners: Human Subjects and Research Ethics, a book that explores the absence of the patient voice in the development of clinical trials.
Dresser recently spoke to Cancer Today about her findings and what she has learned since she was diagnosed with cancer.
CT: How did your experiences as a patient inform your writing about the ethics of clinical trials?
DRESSER: I realized there are things you learn about clinical trials and research ethics that you can’t see when you are just reading about it. After my treatment, I started reading everything, from personal accounts to empirical studies, to learn more about the people who have been in research studies and their experiences. And that’s how this book came together. I felt that these perspectives provided so much rich information that would help us make studies more ethical, and that information could help us make trials better.
CT: Do you think researchers are receptive to patient and advocate input in research?
DRESSER: A lot of researchers do this, but it’s not across the board. Researchers need to develop respect for the patients and clinical trial participants and really see them as experts, just like scientific experts can teach about their respective knowledge areas. They need to be taught this.
CT: What are your thoughts on initiatives started by advocates who work with researchers?
DRESSER: That can be valuable if it is done in an informed way. A lot of new projects that I’ve read about have researchers involved and guiding the project, and I think that’s fine because you need to make sure that researchers get the data in a format that is useful to them, especially if patients are submitting any kind of genetic information as part of the study. I would want to make sure when people put their information out there that they understand what can happen to it and any risks and privacy issues. I want groups to do a good job of informing patients about what’s going to happen to the data—and if they say they will protect the data, they need to follow through and do that.
CT: In what ways can we improve clinical trials for the patient?
DRESSER: I think talking to people who have actual experience being part of the trial is very important. I was offered a trial and didn’t participate, and it could be useful to ask why I didn’t want to be in the trial. Getting this input could help us understand why so many people say no to trials. There’s very low enrollment, and lots of [cancer] trials never finish because they don’t get enough people to participate. If the people designing trials were more receptive to input from people who have actually been in studies, they would be able to design trials that might be more user-friendly, and maybe fewer people would drop out.
CT: What barriers make participating in a clinical trial difficult?
DRESSER: Ordinary people have lives and families. There are extra visits and extra procedures that come with joining a clinical trial. All of that is a lot to ask. If you are sick, every trip out of the house is a big sacrifice. I think one of the silver linings of the pandemic is that researchers are now using telemedicine, where patient visits are online, which could help to ease the burden of traveling for visits. You also have the issue of disparities, which comes into play for people in lower socioeconomic classes. If you’re stretched in terms of finances and family, and there’s already a history of mistreatment around clinical trials in previous generations, it’s a lot to ask.
CT: How can we do a better job of educating people about clinical trials?
DRESSER: I’m aware of a lot of trials where there is a big push to recruit a diverse population. They do this by having people go out into their own communities, at church gatherings, for example, just to educate people about the research. It’s very basic: Treat people as partners, listen to what they say, work with them, and respect them and their knowledge. If you can come up with some collaborative approaches, it’s a lot more likely you are going to be trusted.
CT: What is your advice for a person with cancer who is looking at a clinical trial?
DRESSER: I would read the consent form carefully. Don’t rush into it. I would suggest if you have a doctor who is not involved in the trial and who you trust, talk to that person. There are also a lot of patients who have been in clinical trials who are very altruistic and would love to share experiences. Many advocacy groups have resources like that, and I think that is very helpful.
This interview has been edited and condensed for clarity.
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December 18, 2020