Study title: Ethical oversight in online data sharing platforms (Data sharing and ethical oversight)<br/> Principal Investigator’s Name and First Name: Prof. Dr. Effy Vayena

The goal of this survey is to collect information on how you perceive ethical oversight on online data sharing platforms. You will be asked to answer questions on your past data sharing experience, your beliefs regarding data sharing, and your opinion on the mechanisms of application of the main ethical principles in online data sharing platforms. The project has no access to your personal Open Human data and only identifies you via randomized project member ID. Therefore you will also be asked some demographic questions about yourself.

The study has been founded by the Swiss National Science Foundation (SNSF). Only the principal investigators and their collaborators will have access to the original data under strictly observed rules of confidentiality. Your answers to the survey will be stored safely and reported in anonymous form, or aggregated with all other answers.

Completion of the following survey will last approximately 15 minutes. You can participate if you have an account on openhumans.org, no matter when you opened it. You will be exposed to no risks by participating. The survey is planned to be open for one month.

You will receive no compensation for participation. However, if you wish, we will send you an email with your own answers to this survey and/or another dataset with the participants’ aggregated answers. This way, you can compare your own answers with those of the other participants. You have the right to withdraw from the study at any time without specifying reasons and without any consequences.

This information is also available here: https://www.openhumans.org/data-management/datafile-download/64745/

In case you have questions and/or difficulties, please contact us via openhumans@hest.ethz.ch or directly:

Prof. Effy Vayena (Principal investigator), Health Ethics and Policy Lab, Department of Health Sciences and Technology, ETH Zurich: effy.vayena@hest.ethz.ch

Dr. Alessandro Blasimme (Collaborator), Health Ethics and Policy Lab, Department of Health Sciences and Technology, ETH Zurich: alessandro.blasimme@hest.ethz.ch

Dr. Marta Fadda (Collaborator); EDIT on Oct 31, 2018: Dr. Fadda is no longer at the Health Ethics and Policy Lab. Instead, please contact: Anna Jobin (Collaborator), Health Ethics and Policy Lab, Department of Health Sciences and Technology, ETH Zurich: anna.jobin@hest.ethz.ch

Participant:

• I have read the above information for participants and my questions related to participating in the study have been answered satisfactorily.
• I know I can print this information or request a copy at any time and can withdraw from the study at any time without giving reasons and without any negative consequences.
• I agree that the principal investigators and their collaborators have access to the original data under strictly observed rules of confidentiality.
• I am aware that the investigator can, without mutual consent, exclude me from the study if I do not meet the inclusion criteria.
• By clicking on the “ACCEPT” button, I certify that I agree to all aforementioned points and participate in this study on a voluntary basis.