Science communications in the developing world

Russell agrees and emphasizes that communication is a big factor in establishing trust, generally and not only for one population or another. People need to hear back how their contributions helped.

Our moderator, Sorensen asks Russell to discuss more about what GAPPS has been doing in the developing world with regard to communication.

Russell: “We’re focusing on populations where these problems are the most acute, with high rates of preclampsia and pre-term birth and more.” Russell recalls meeting with women living in villages in Bangladesh and India. They had seen so many babies die in their villages that they really wanted to participate in research. They understood immediately that this would help not only in their lives but that it would help women everywhere in the world. They were very enthusiastic and wanted to contribute.

Sewards repeats out loud a question they consider often: Should one population bear the burden for all? They seek a middle ground in knowing that some populations need more protection than others.

Sewards mentions the Belmont Report and says that we also need to ensure research benefits all, not any one population. See also a less technical description of the Belmont Report.

Historical abuses and public trust

Sorensen asks: “Have historical abuses discouraged too many from participating?”

Edwards answers: Public trust is huge, whether working with a historically disadvantaged or abused population or just the general question of public trust in institutions.

We don’t have health care for everyone in America. In places like Canada and England, there tends to be more enthusiasm in signing up for a population based study because people feel they benefit from the research. Public health and a more comprehensive system ensures greater protection for and benefits for participants.

That’s a problem in America both generally and especially in populations like African Americans who have suffered particularly infamous abuses like in the Tuskegee syphilis experiment. Some Native American tribes keep control of data, sharing with only the projects they are interested in.

Edwards closes by observing that there is a breakdown in communication, both with specific populations after research is completed and with the public in general. People aren’t getting the feedback they expect from scientists.