Sharing Guidebook

The purpose of this guidebook is to help researchers build better studies.

This guidebook compiles the sharing patterns from leading biomedical research studies. The main question is this: Do studies approach sharing data and results similarly? Are there are a couple patterns? Or, is each study unique and artisanal in its methods and approach to sharing?

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Participating Studies

We've selected a handful of biomedical research studies and examined how each study is organized in a few key areas, including "equal access", "open science" and "recontact". We summarize the results of this analysis across all studies in the sections below. This list of studies is not a representative sample. Many of hte studies examined here were participants in the 2016 GET Labs event at Harvard Medical School, other studies were hand-picked due to their approach to sharing. We also provide a more detailed examination of each individual study, linked from the following list:

  • Harvard Personal Genome Project
  • mPower
  • Asthma Mobile Health
  • American Gut
  • Texas Cancer Research Biobank: Open Access Database
  • Exome Aggregation Consortium (EXAC) Study
  • Do you want your study listed on this page? Please fill-out this short survey.

    Equal Access

    Equal access is a model of governance where a research participant and the research team share individual-level research data with each other. Researchers do not have exclusive access and control over data generated in the study, instead data flows in both directions. If you sign-up for study practicing equal access, then you should expect to be able to access your slice of data in the study.

    both ways

    DO practice equal access

  • Harvard Personal Genome Project
  • mPower
  • Asthma Mobile Health
  • American Gut
  • one way

    DO NOT practice equal access

  • Exome Aggregation Consortium (EXAC) Study
  • Texas Cancer Research Biobank: Open Access Database
  • Open Science

    Sharing study data requires planning and effort. There are governance considerations, platform requirements and operational resources needed to implement sharing that goes beyond the primary research team. We looked at each study and noted any cases where broad sharing of study data is implemented. Specifically, we noted whether any of these 3 groups of people have access to the aggregate study data: (1) participants in the study (2) external researchers and (3) general public.

    participants external scientists public
    American Gut YES YES YES
    Asthma NO YES NO
    ExAC YES YES YES
    Harvard PGP YES YES YES
    mPower YES YES YES
    TCRB-OA YES YES YES

    (re)Contact

    The ability for researchers and participants to work together over time can be incredibly valuable to science, especially if discoveries are made or new research questions arise beyond the scope of the initial study. How do studies enable contact with participants?

    other participants research team external scientists public
    American Gut NO NO NO NO
    Asthma NO YES NO NO
    ExAC NO NO NO NO
    Harvard PGP NO YES MAYBE NO
    mPower NO YES NO NO
    TCRB-OA NO MAYBE NO NO

    Works in Progress

    DRAFTS FOR REVIEW BY RESEARCH TEAMS: These are partially complete, with feedback needed from the research team:

  • Test My Brain
  • GoViral
  • Circles
  • DNA.Land
  • Mole Mapper
  • Open Humans PDS
  • Appendix

    Historical Precedents for Equal Access to Data

    Here is a list of biomedical research studies that have pioneered providing participants access to data generated about them in a research study setting.

  • Genome data: Harvard Personal Genome Project (Harvard Medical School)
  • Microbiome Data from Bodily Habitats: American Gut Project (UCSD, previously Univ Colorado)
  • Genotype Data: Genes for Good Study (Michigan)
  • Viral data: GoViral (NYU)
  • MRI Data: Steven Keatings Fear Study --- need name (MIT?)
  • Sydney Genomics Collaborative
  • About GET Labs

    The GET Conference is preceded by a uniquely interactive event on April 25th called GET Labs + Expo. At GET Labs, you get the opportunity to experience some of the best participatory health research studies available today. You can advance human health and disease research through direct participation in up to 20 different studies.

    Contributors

  • Jason Bobe
  • Anne West
  • Mozilla Science Fellows & Mozilla Science Lab staff
  • Members of the research teams from all the participatory studies -- thank you!
  • CC0
    To the extent possible under law, Jason Bobe has waived all copyright and related or neighboring rights to Sharing Guidebook. This work is published from: United States.