Help shape our Code of Conduct

Dear Open Humans members!
We are currently in the process of working on a Code of Conduct that should cover both Open Humans as platform and all of its communication structures as well as the projects that are run on Open Humans.

By including projects into the Code of Conduct we hope to set clear expectations to both project members as well as project leads on what kinds of behaviors we hope to see on Open Humans and which we deem unacceptable. Through this we hope to make sure that participants of Open Humans - who do not only donate significant amounts of personal data but also of their personal time - are treated in a fair and equitable way.

We are looking for input on drafting the Code of Conduct - from all of you! Through this we want to make sure that the whole community has its say in how to shape what kind of community Open Humans as an ecosystem represents. In particular, we’d like to hear about potential misunderstandings or abusive behavior that are unique to our community - which includes academic researchers, citizen scientists, open source developers, and patient communities.

We are especially interested in hearing from you about three things:

  • What would be exemplary behavior that projects on Open Humans can show towards you as a project participant?
  • What would be some of the negative scenarios to avoid on how project organizers and participants interact?
  • Can you imagine other negative interactions in the community we want to prevent?

Please leave your ideas below, so that we can include them in our Code of Conduct.

Thanks so much,


here’s what comes to mind for exemplary/negative behavior:

exemplary behavior:

  • frequent updates on project status
  • sharing of results back to participants
  • demonstrates thinking about how to make project inclusive

negative scenarios:

  • participant data shared non-publicly is leaked due to improper security precautions
  • data is shared with third party (without asking participant) who does something untoward with it

+1 for @beau’s comments. Also:


  • Transparency about how data is being used, and how that might have changed over time (if applicable)
  • Transparency about who is using the data from the projects
  • Sharing outcomes from/for the project, in addition to results

Question - should there be a general time frame recommended for following up with updates to project members?

Specific to project administrators:

  • Clear asks, including specific but appropriate timelines, when requesting data, or knowledge/consulting related to the project’s data
  • Respect and acknowledgement for project administrator’s and participant’s time. (this may range from acknowledgement in publication of data set source, to authorship for the project administrator, to a stipend in a research project grant toward the project administrator’s time consulting on the project for implementing a data set from a project.)


  • Analysis of individual data being shared directly tied to the member number - e.g. if an example is used, instead of "this is 12345678’s data), use a coded data set (this is individual 3’s data out of n=18).
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I especially think about the point @danamlewis made, about respecting people’s time.

I’d read it to include time they’ve already spent investing in something. One of the things I worry about is about anybody feeling “taken for granted” or “used”. I don’t think anyone means to do that, but I think it can happen when people with different skillsets come together.

Some examples…

  • someone that’s very active in a community has a lot of investment in those relationships - asking them to work with you for outreach is a real cost to them, not just their time, but the past work they’ve done to build contacts and community.
  • a developer of a tool may have invested a lot of very technical, unpaid work into providing something others can use. That investment matters, and keeping the tool working or improving it might be harder than you realize!
  • an academic researcher has invested time into knowing how to do research, including publishing and ethics reviews. In some ways they have more resources, but funding support is often spread pretty thin. Engaging people one-on-one may come at a cost of time spent on professional work.
  • a participant in a project is another person! Possibly someone that earns more than you do. Be mindful of the time you hope they’ll give to your project.

When someone is contributing to the community, many others benefit, and I want everyone to feel like their time & skills are valued & respected. :slight_smile: