Scientists consider sharing findings with study participants a “moral duty” but still do it inconsistently, according to new research.
A conducted by academics in Australia, the UK and Papua New Guinea looked at 96 studies that focused on dissemination of health-related research.
They found consistent support for the principle of sharing results but a lack of follow-through. In a US survey of 414 researchers, for example, two-thirds believed results should always be shared, yet only 8.1 per cent had concrete plans for dissemination.
At the same time, there was found to be high demand from the participants themselves. In one study,?70 per cent of UK cancer trial participants wanted to see the results.
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Where results are shared, most researchers were found to rely on “passive methods” that place the burden on participants to use their own initiative to access them. Results documents were also found to be written for a scientific audience and difficult for?other readers to understand.
Among the barriers to sharing the results were limited preparedness, logistics, finances and lack of institutional guidance.
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The absence of policies or funder requirements often left researchers without direction or support, with only 22.5 per cent of malaria researchers reporting institutional backing. Other barriers included poor communication and insufficient training.
Participants viewed results sharing as essential for trust, respect and fulfilling an implicit “contract” between researcher and participant. They saw it as a right, a moral duty, and recognition of their time and effort?that were often otherwise uncompensated.
Reasons for wanting to see results included curiosity, awareness of research directions, and tools for personal and community health improvement.
Researchers similarly saw dissemination as an ethical duty, especially when results could benefit participants or those with limited access to scientific publications. Even null or negative results were valued, as seen in a 13-year cataract prevention supplement trial where older participants appreciated being informed of its lack of benefit.
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Further benefits of sharing results were strengthened relationships, a sense of shared ownership of the work and increased accountability for public funding.
It also helped to counter misinformation, raise community health literacy, and improve healthcare delivery.
A minority of researchers opposed or were unsure about sharing results, citing concerns over health literacy, absence of explicit requests, difficulty explaining incomplete data, and potential distress or privacy breaches, particularly in small communities.
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