The Open Humans Activity Approval Process

Open Humans activities are diverse: they may be managed by individuals, research teams, organizations, and more. With the exception of activities managed by Open Humans Foundation directly, activities must apply for review to be “approved” on the site. This removes a user limit cap & lists it publicly on Open Humans. Activities are approved by the Open Humans community following a discussion in our forums .

How it works

1. An activity requests approval via a new topic created in Activity Reviews.
2. To contribute to a review, reply to a topic with a vote and/or a comment.
3. Once enough feedback occurs, a decision will be made and the topic will be closed.

Activity leads can create this topic on their own or ask the Open Humans team to help creating the topic by emailing support@openhumans.org with the subject "Request for activity approval". Please include a copy of your IRB approval documentation if you are requesting approval for a Study.

Activities that are already approved may undergo a re-review at any time (at the request of Open Humans Foundation, the activity owner, or a member of the community).

Voting

Please vote Approve to support approval, or Deny to deny approval. Please give reasons, especially when activities have issues that they might address and/or others should be aware of.

Your vote may change if a activity modifies itself in response to concerns that are raised. If you change your vote, please edit to add the new vote, and retain the old vote with “strikethrough” (<s></s> HTML tags).

Similar to Wikipedia’s approach, the final decision will not necessarily be a strict tally of votes, but should reflect a consensus formed by the discussion process.

Guidelines for reviewers

The primary question to answer is this: "Should this activity be visible and available for all Open Humans members to join?"

The above question is the primary question to consider when reviewing. Answering it may include considering the following:

• Is this activity following Activity Guidelines?
• Is this activity communicating clearly about…
  • who manages it?
  • what members will be asked to do?
  • what is in the data it has access to?
  • security, privacy, and data management?
• Are the claims made by this activity realistic? Are its communications misleading or untruthful?
• Would a member’s decision to join be sufficiently informed?

While following Activity Guidelines is expected of all activities, the review process is not necessarily limited to this. New situations may arise that lead the community to reconsider the guidelines themselves.

Disabled public sharing

From time to time it is determined that private data may be too sensitive to be made publicly available. These determinations are made by Open Humans staff on a case by case basis.