A fair trial

Science relies on data from clinical trials for information about effective treatments, cutting-edge therapies, and even the best age at which to get screened for life-threatening conditions. Yet Black people make up only 5% of participants, leading to knowledge gaps that can-and do have dire consequences. SO HOW DO WE CLOSE THE GAP?

- MELBA NEWSOME

Karen Peterson followed her doctor’s treatment directions to the letter: After her Stage I triple-negative breast cancer was diagnosed in 2015, she had four rounds of chemotherapy and a double mastectomy. Two years later, however, her cancer returned, and this time it was Stage IV. The first time, I was just doing what I was told to do. It was all reaction,” says Peterson, 58. There is no handbook to get you through your journey.”

But by the time the cancer came back, Peterson knew a lot more about her type of cancer. Diving into the research, she soon came to believe strongly that for the stage of cancer she had, conventional treatments offered little hope. If she wanted to live, she felt, she had to swing for the fences and possibly apply to be included in important clinical trials that might yield some new treatment options. This was a possibility her doctor never suggested.

Over the next few months, Peterson called, emailed, and literally knocked on the doors of doctors who were researching different kinds of targeted drugs and immunotherapies. (She'd found their trials listed on clinical trials gov, the clearinghouse for publicly and privately funded medical research on many conditions.) What they told her confirmed her instincts: She needed to act now. The first thing she had to do, they advised, was undergo genomic testing to identify the characteristics of her fast-spreading cancer and determine whether immunotherapy might keep it at bay. Peterson brought this information to her treating oncologist.