Personal Data Privacy Not a Concern for Vast Majority of Clinical Trial Subjects, Study Finds

June 11, 2018

Patients overwhelmingly feel that the benefits of clinical trials outweigh the risks to their personal privacy, according to a new study in the New England Journal of Medicine.

A trio of researchers at Stanford’s medical school surveyed 771 people who had either enrolled in clinical trials or whose children had enrolled in trials. The researchers asked a series of questions gauging their levels of concern over patients’ data privacy. Statements included, “It could be harder to get people to agree to be in clinical trials if they know their data will be shared” and “It could be embarrassing if the information was linked back to me.”

Fewer than 8 percent of the respondents said that the potential harms of data breaches outweighed the benefits of participating in trials, 82 percent said the benefits outweighed any risks and 10 percent called it even. In fact, respondents “were more concerned that data sharing could deter people from enrolling in clinical trials (37 percent), that companies might use the information for marketing purposes (34 percent) or that their data could be stolen (30 percent),” lead researcher Michelle M. Mello wrote for her colleagues.

More than that, “strong majorities” of respondents “believed that data sharing would yield ‘a great deal’ or ‘a lot’ of several benefits,” Mello wrote.

“When respondents were asked to choose the most important benefit of data sharing, the most popular choices were making sure people’s participation in clinical trials leads to the most scientific benefit possible (18 percent) and helping to get answers to scientific questions faster (17 percent),” the study says.

“Their willingness to share was high regardless of the way in which the data would be used, with the exception of litigation, and it extended to uses that involved no prospect of direct benefit to themselves or their family members,” Mello wrote.

The study is consistent with years of data that patients and parents in clinical trials are grateful for the chance to participate. There were even some paradoxical results. “Despite low levels of trust in pharmaceutical companies,” Mello wrote, “most trial participants were willing to share their data with them.”

The positive vibes may be attributable in part to the fact that so few people are able to participate in clinical trials, Mello and her colleagues speculated.

“Clinical trial participants typically constitute a small proportion of the people who are eligible for participation and may represent those who are least bothered by data sharing and most enthusiastic about contributing to science. Their familiarity with physician-researchers may impart especially high trust in research and researchers. Indeed, nearly all of our respondents reported very positive experiences as trial participants,” Mello wrote.


-By Bill Myers