This month's Research Ethics Roundup covers public trust in data sharing, geographical equity efforts, income-based study attrition, and problems with genetic ancestry categories. Read more
PRIM&R is calling on NIH to improve its outreach to the public in determining new rules and procedures for sharing their genetic data when participating in research. We also ask for rigorous study of methods for protecting data privacy outside of deidentification, which can no longer be relied upon by itself to permanently protect data. Read more
On October 29, the Final NIH Policy for Data Management and Sharing was published. It will require “researchers to prospectively plan for how scientific data will be preserved and shared through submission of a Data Management and Sharing (DMS) Plan” and will apply to any NIH-funded or -conducted research that generates scientific data. It will be effective as of January 25, 2023. The final rule isn’t perfect: there is no mandate to share data, and grantees will need guidance on crucial questions of communicating these complex issues to participants. Nevertheless, the rule represents a positive step toward expanded, responsible sharing of data, which is critical to both good science and just treatment of research subjects. Read more
The proposed Supplement subverts the aims of scientific transparency in a manner that potentially harms public health, increases time and resource burdens on scientists, and threatens to reduce the ability of researchers to recruit study subjects. PRIM&R joins stakeholders in urging the EPA to reconsider the rule, so that vital, potentially life-saving research may continue. Read more
PRIM&R endorses the OSTP efforts to improve the consistency of guidelines for best practices in long-term storage of data from federally funded research. We especially appreciate the current step of developing a proposed, common set of desirable characteristics of data repositories, because this kind of forward thinking has the potential to improves standards for both government and non-governmental data repositories alike. Read more
