"For cholesterol study volunteer, an unsettling discovery in a Science paper: herself"

"What health information do researchers owe the volunteers in their studies, especially when it’s not clear what it means and whether or how to act on it? And should researchers notify volunteers of publications in which their individual story is chronicled, even if it’s impossible for others to identify them from what’s written? Woidislawsky’s experience shows that “the risks of publishing information about people are not just privacy,” says Christine Grady, chief of the bioethics department at the National Institutes of Health Clinical Center in Bethesda, Maryland. “They might learn something about themselves that they didn’t know.”...

Woidislawsky’s story holds lessons for researchers like Rader, for the ethicists who guide them, and even, I came to believe, for journalists like myself who communicate new findings. “In general, we don’t do a good job of giving people who have volunteered in research any feedback on the study,” says Grady, who urges, “give people results more often, even in the aggregate.” Grady wonders, too, whether research volunteers understand that a primary goal of scientists is to publish their results. “There’s a lot of consent forms that don’t say anything about publication,” Grady says...

I began to wonder, as we talked and I felt a powerful urge to reassure her, whether my news story had overplayed Woidislawsky’s individual tale in order to more dramatically suggest that HDL might not always be advantageous. Other reporters had gravitated to this narrative as well. One story described Woidislawsky as a “Jewish grandma” and said that despite high HDL, “her arteries are still as thick and gummed up as an old rusty pipe.” What was in the press about her coronary arteries was enough to induce palpitations in anyone."

http://www.sciencemag.org/news/2016/05/cholesterol-study-volunteer-unsettling-discovery-science-paper-herself

Hmm - I definitely agree with this, I feel like people should have the finished paper emailed to them at least. And it's interesting, who owns that data? Like, there is a well publicized psych study about note-taking methods that I was startled to realize I was a part of (I wouldn't have remembered it, probably, unless I had happened to read an article that described the methods). I would love to know where I fell in the distribution of data points, especially because it was advising against a study habit that I practice. Do I have any right to this information, especially because that is asking for the service work of the scientists who analyzed it?