A Science paper published earlier this year in part described a woman with a rare genetic variant and high HDL cholesterol levels, who — despite having high levels of so-called "good cholesterol" — had detectable arterial plaque.
Rita Woidislawsky, the woman described in the study, tells ScienceInsider that she only learned the study was coming out because she ran into the PI at a local coffee shop, and he later sent her an email about it. She figured that she was one of thousands in the paper with the variant he mentioned. But she was the only one they found that was homozygous for it, ScienceInsider notes.
This sent Woidislawsky on a quest to find out more about her mutation and HDL cholesterol, and to wonder why she hadn't been told.
"In general, we don't do a good job of giving people who have volunteered in research any feedback on the study," Christine Grady, chief of the bioethics department at the National Institutes of Health Clinical Center, tells ScienceInsider. She advocates that people should be given results more often, even if they are aggregated.
The consent forms Woidislawsky signed made no mention of returning results. And The PI, Daniel Rader at the University of Pennsylvania, says that he wasn't sure how to handle the situation as the paper wasn't a case study but did hinge heavily on Woidislawsky's case. He now includes a question for research participants he enrolls that asks whether they want to know of any findings.
"I really think we need to start a much bigger conversation about this and get some collective ideas from patients about how to handle this," Barbara Koenig, a medical anthropologist at the University of California, San Francisco, adds. "The patients want to be partners."