NIH Needs Your Feedback on a DRAFT NIH Policy for Data Management and Sharing

NIH has released for public comment a Draft NIH Policy for Data Management and Sharing along with supplemental draft guidance. Since releasing a Request for Information last year on Proposed Provisions of a Draft NIH Data Management and Sharing Policy, NIH has received helpful feedback that has been incorporated into this version of the draft policy proposal. The draft policy requires all NIH-funded grantees to submit a Data Management and Sharing Plan outlining how researchers plan to manage scientific data, including when and where the scientific data will be preserved and shared. Plans may include consideration of other factors (e.g., legal, ethical) that may appropriately limit data sharing. 

Continue the conversation and let the NIH know what you think works and what doesn’t in the proposed policy by submitting your comments through the web-portal no later than January 10, 2020. For more insight on the draft policy, see Dr. Carrie Wolinetz’s Under the Poliscope blog post and check out the informational public webinar on Monday, December 16 (12:30pm to 2pm ET).  

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3 thoughts on “NIH Needs Your Feedback on a DRAFT NIH Policy for Data Management and Sharing

  1. I would like to provide my expert feedback regarding the NIH Grants’ Offices-Draft Policy-related new strategic target-driven goals and public health-oriented scientific/clinical research ethics-based issues:
    1. Responsible conduct of biomedical research adhering to core tenets of ethical human subject research should be stringently followed by grant-applicants vying for federal budgetary support for continued professional developments in briad areas of medical research specialities; for instance, I have considerable expertise in diverse areas of biomedical research/life sciences with demonstrated publication-track records in international journals in specialities spanning from obstetrics/gynecology/infertility/reproductive medicine, oncology, urology, public health, allery-asthma-pulmonary medicine, cardiovascular/CABG-surgery, gastroenterology-hepatology, etc. and would like to emphasize the essence of responsible data-sharing with written informed consent of eligible research participants with stringent inclusion/exclusion criteria(s)! Protocol-based IRB#s with timeline driven strategic priorities should be transparently indicated in initial grant-applications for unbiased, ethical research with eventual clinical impact for overall effective dissemination of innovative scientific data and clinical research knowledge globally.

    2. Authorships/lead and senior authorships with responsible data-sets and ethical research practices with precisely-cited/quoted program funding agency’s grant# with fiscal years’ research outputs alongwith due acknowledgements to NIH Grants USA should be specified.

    3. Overall, I gained critical research insights by meticulously perusing the article with expert snapshots provided by my American clinical research contemporaies/senior grants experts at USA!

    Being an Asian Indian female scientific/clinical research professional with proven excellence in medical research as evident in my 45 lead authorships as of December 2019, I wish to congratulate my American expert team at NIH USA Grants’ offices for providing an academically fascinating opportunity for continued professional developments by such expert NIH-nexus article/summaries regarding ethical data-management.

    Wishing all Americans “Happy Holidays and Merry Christmas” for fiscal year 2019!
    Looking forward to “Happy New Year 2020”!!!

    Dr. Saumya Pandey Ph.D.
    Lucknow, India

  2. Data management and sharing guidelines as they relate to urban American Indians/Alaska Natives

    Seventy percent of American Indians/Alaska Natives (AI/ANs) reside in urban areas. There is incredible diversity of AI/ANs reflected in urban areas. For example, in Los Angeles County, over 100 tribes are represented. Although specific tribal nations may not possess their distinct rights to land ownership in urban areas, ethical responsibilities must be recognized with regard to data sharing. Our research team for our HEAL research project (Co-Principal Investigators Drs. Elizabeth D’Amico and Daniel Dickerson) is conducting a study analyzing the potential benefits of an integrated intervention for young AI/AN adults. We have conducted various studies within the urban area and have routinely established community advisory boards and engaged numerous urban Native American health organizations in our programs. It is important to recognize that data sharing is a sensitive issue with the Native American population, and although there is not a specific governing board for urban areas given the tribal diversity, researchers must be aware and work with communities on this issue. We will be conducting meetings in the very near future that will address the NIH Policy for Data Management and Sharing initiative with our community advisory board for our HEAL project in order to develop an appropriate data management and sharing plan that we hope will be recognized by the NIH as a culturally appropriate response to this initiative. This plan will address how data collected within our urban area should be stored and shared with the research community. This plan will also include a process detailing how research groups can use, publish, and present data that will most likely require approval by our community advisory board and possibly our regional Indian Health Service Institutional Review Board (IRB). We thank the NIH for this opportunity to provide these comments.

    • Thank you for sending your thoughts. To ensure your thoughts are considered in the official analysis of the RFI comments, please be sure to submit them through the official collection point, which is this web portal.

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