During Brazil’s 2016 Zika outbreak, parents of babies born with the syndrome stepped up to join studies.
Now, they feel used, accusing researchers of failing to communicate study results.
In the rush to collect data, some researchers concede they fell short on clearly explaining study limits, expectations, and results to families.
“For the researchers, the result is what is published in a well qualified scientific journal or goes into their resume,” said Soraya Fleischer, a University of Brasília anthropologist. Families, meanwhile, need answers and help, or documentation to access benefits.
Lesson Learned: Researchers leading new studies must work harder to gain the trust of wary families.
A Model: Fleischer’s team returned periodically to visit families, and created a blog summarizing findings and short stories aimed at busy parents.
Tips from Ethicists:
- Respect caregivers’ intelligence and contributions
- Translate findings for non-scientists
- Make published studies publicly accessible
The Quote: “It’s like we were lab rats. They come in nicely, collect information, collect exams on the child, and in the end we don’t know of any results,” said Rochelle dos Santos, mother of a child in a Zika study.