Over the past 20 years, the National Institutes for Health (NIH) has implemented several policies designed to improve sharing of research data, such as the NIH public access policy for publications, NIH genomic data sharing policy, and National Cancer Institute (NCI) Cancer Moonshot public access and data sharing policy. . . . Important questions that we must consider as data sharing is expanded are to whom do benefits of data sharing accrue and to whom do benefits not accrue? In an era of growing efforts to engage diverse communities in research, we must consider the impact of data sharing for all research participants and the communities that they represent.
We examine the issue of data sharing through a community-engaged research lens, informed by a long-standing partnership between community-engaged researchers and a key community health organization (Kruse et al., 2022). We contend that without effective community engagement and rich contextual knowledge, biases resulting from data sharing can remain unchecked. We provide several recommendations that would allow better community engagement related to data sharing to ensure both community and researcher understanding of the issues involved and move toward shared benefits. By identifying good models for evaluating the impact of data sharing on communities that contribute data, and then using those models systematically, we will advance the consideration of the community perspective and increase the likelihood of benefits for all.
https://doi.org/10.1016/j.socscimed.2023.115895
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