This policy addresses user conduct, ownership, data collection, data storage, maintenance, management, use, dissemination and disposal of the PHA4GE Ethics and Data Sharing Platform, and is designed to complement existing PHA4GE policies (www.PHA4GE.org).

Background

The PHA4GE Ethics and Data Sharing Working Group has established the PHA4GE Ethics and Data Sharing Platform to encourage conversations and collaborations between researchers with an interest in research ethics and related topics. The platform provides a forum for discussion, Q&A, solutions and guidance, collaborations and other activities, all aimed at collaboratively gaining insights into ethical and data sharing issues in research.

The PHA4GE Ethics and Data Sharing Working group particularly aims to foster a platform that can change and improve the current ethics research culture, and support a vibrant, supportive and collegial community of researchers interested in ethics and data sharing/governance. We aim to achieve this by providing a forum in which we can learn to work together honestly, respectfully and equitably, building trust, and developing a strong and positive collaborative community in ethics practice. The PHA4GE Ethics and Data Sharing Platform is intended to advance ethics research and nurtures researchers from a wide variety of different professional backgrounds and career stages.

The website

The website will provide user access to a variety of opportunities, including ongoing discussion threads about various issues, project proposals seeking collaborators, the opportunity to initiate collaborative projects or ask for help with ethical issues, posts about training opportunities, seminars, blogs and commentaries, new publications, and other content, with some opportunities to apply for small project grants.

The discussion forums will be moderated to ensure appropriate communication between users. The PHA4GE Consortium retains the right to suspend accounts of users breaching the conditions of use, and the right to report any illegal content to appropriate internal/external authorities.

Data Ownership and Management

The PHA4GE Consortium is the owner of PHA4GE Ethics and Data Sharing Platform. The PHA4GE Ethics and Data Sharing Working Group co-Chairs and developers will manage access to the database. Content copyright the PHA4GE Ethics and Data Sharing Platform belongs to the PHA4GE Ethics and Data Sharing Working Group and the specific content contributors.

Data Collection

All individuals participating in the PHA4GE Ethics and Data Sharing Platform will be identified by their official names and affiliation, and a record of participation by all users will be maintained as an inbuilt function of the platform.

The PHA4GE Consortium may present reports on forum activities, publish aggregate data about user numbers and describe overall user activity on the platform, without identifying any individual users.

Usage

For platform management, support and maintenance purposes, limited access will be given to PHA4GE Ethics and Data Sharing Working Group Members. Access to the entire database will be restricted to the PHA4GE HUB, the developers and the funders. Special access to the database can be requested through the PHA4GE Ethics and Data Sharing Working Group, contact details can be obtained through the PHA4GE HUB.

Terms and Conditions

The users agree:

  • To do their part to ensure that the platform is does not tolerate bullying, harassment, abuse, excluding and other negative behaviours
  • To refrain from providing any content (e.g. images, logos, text of other media and commentary) that might cause any harm or incite violence, including inflammatory, divisive, offensive or insensitive content; misinformation, disinformation and conspiracy theories; offensive and/or off-topic commentary on politics, religion, race, gender, sexual orientation, disability or other personal orientations, belief systems and protected characteristics.
  • To respect the ownership and copyright of content of the website by those who have generated that content. By this, we mean that where a particular discussion group, thread or forum has generated ideas, discourse, proposals for activities, and other intellectual output, this material remains the combined property of the users who generated the material together with the PHA4GE Ethics and Data Sharing Working Group who has facilitated, moderated and participated in generating the material.
  • To adhere to the publication policy of the PHA4GE Consortium and the PHA4GE Ethics and Data Sharing Platform, which states that presentation and/or publication of platform content will be decided by the users who generated that content, will acknowledge PHA4GE appropriately, and will be undertaken with the oversight and agreement of the PHA4GE Ethics and Data Sharing WG.
  • To refrain from sharing any content (images, logos, text or other media) that may compromise the privacy of individuals, may not be authorised for sharing, or may have any other restrictions.

Users acknowledge and accept that:

  • The discussion forums will be moderated to ensure appropriate communication between users. The PHA4GE Consortium retains the right to suspend the account of any user breaking the conditions of use, and to report any illegal content to internal and/or external authorities.
  • The opinions expressed in the discussions on the platform are those of the platform users and may not necessarily be shared by the PHA4GE Consortium. PHA4GE Consortium is not liable for any outcomes relating to opinions or activities of the users.
  • Ownership and copyright of the website’s content remain the property of the PHA4GE Ethics and Data Sharing platform, recognising the joint ownership by contributors (users).
  • The PHA4GE Consortium may present overviews of the activities on the platform, or provide reports on these activities, publish usage aggregate data s and overall activity without identifying any individual users.
  • Presentation and/or publication of platform content will be decided by the users who generated that content, with the oversight and agreement of the PHA4GE Ethics WG. Proposals for projects and publication of papers will follow the described protocols for these activities, following standard recognition of authors and contributors according to their specific contributions, and acknowledging PHA4GE appropriately.

Dissemination

Aggregated data in the form of infographics and reports about usage and activities on the platform may be made publicly available. De-identified data about platform usage and activities may be used for publications in scientific journals. General descriptions about the type of ongoing projects may also be given. Detailed descriptions of ongoing projects and their outcomes will only be given where the users running and participating in those projects have agreed to the intended use. Authorship for such studies will be determined by contributions to data analysis and manuscript development and is described in detail in the Publications Policy for the platform.

Disposal of the database

The contents of the Ethics Platform may be archived and stored if and when PHA4GE is dissolved. If the database is archived, access to the database will be possible through applications to custodians of the database who will be assigned by the PHA4GE Steering Committee.

Summary of PHA4GE Ethics Platform Publication Policy

The PHA4GE Ethics and Data Sharing WG Publications Policy provides detailed information about publishing papers arising from activities on the PHA4GE Ethics and Data Sharing platform.

In brief:

  1. Prior to starting any work on a publication, the publication proposal template must be completed and submitted to the PHA4GE Ethics and Data Sharing Working Group for approval. The proposal will be presented and reviewed at the monthly Working Group meeting.

  2. The authors will receive an outcome of this review, with clear reasons for the decision given.

  3. Once the publication draft is ready to be submitted, it must be shared with the PHA4GE Ethics Working Group for review and approval for submission. This process is to check that the submission aligns with the goals and conditions of the PHA4GE Consortium, the PHA4GE Ethics and Data Sharing WG, and the platform policies; and working group members who undertake this review will not anticipate authorship, acknowledgement or any other formal recognition of input into the publication.

Summary of process for proposing new projects

A brief project proposal template [link to document] must be completed and submitted for review to the PHA4GE Ethics and Data Sharing Working Group at the start of new projects via the platform.

The aim of this process is to ensure that:

  • There is transparency around projects ongoing within the platform community
  • Projects generally align with the overall values and aims of PHA4GE
  • There is not significant overlap between parallel projects. Where projects may have substantial overlap the WG will encourage collaborative efforts.
  • To ensure that individuals’ contributions are fairly recognised for projects that are undertaken via the platform
  • To discourage plagiarism by documenting ongoing projects.

The proposal will be presented and reviewed at the monthly Working Group meeting, for approval. The proposal authors will receive an outcome of this review in a timely fashion, with clear reasons for the decision given.