Open Humans strives to be a safe and transparent environment for you to receive, manage, and share your personal data, including data from health activities and research studies.
We want you to know about our practices so that you can make good decisions about how you use Open Humans. This policy explains what information we collect about you, what we do with it, and how you can make choices about sharing it with others.
Open Humans is a project of the Open Humans Foundation, a 501(c)(3) nonprofit founded in 2008 and is dedicated to making a wide spectrum of data about humans accessible to increase biological literacy and improve human health. Sharing data is critical to scientific progress, but has been hampered by traditional research practices. Our approach is to invite willing participants to share their personal data for the greater good. Open Humans strives to make this possible by helping connect researchers and participants who wish to share data with each other.
Please read this data use policy carefully. It applies to all interactions you have with the Open Humans website.
We collect some personal information from you to create an account that you can use to participate in Open Humans and to keep you safe and secure on our site.
We also collect personal information to make sure Open Humans works properly and to improve your user experience. This may include using your information for analytical purposes.
You may also choose to share data directly with studies and other projects run by third-party researchers, other Open Humans members, or the general public. Third parties are responsible for their own data practices.
Below is a more detailed explanation of the information we collect and use. And you you can find a full list of our records of personal data processing activities .
When you create an account with Open Humans, we ask you to provide an email address, name, username, and password. Open Humans stores this information to help identify you when you log in, make it possible for you to manage and change information in your account, and build the Open Humans community.
When you create an account, you will be asked to provide a public name and public username, which will be associated with you account's public profile. Your account’s public profile also lists any projects you've participated in, and may be expanded to include a profile picture, your publicly shared data, and an "About me" section. Think carefully about which name and username you use within Open Humans. As long as you follow our Naming Guidelines, you’re free to choose a pseudonym as your name and username.
Unless otherwise allowed via written agreement with Open Humans, an account must represent an individual – your personal data, or someone for whom you are a legal guardian.
Even if you use a pseudonym, you should be aware that data could be connected to your identity.
Your basic profile information on Open Humans is public information. Public information is exactly what it sounds like: anyone, including search engines and people who are not users of Open Humans, will be able to see it.
Once you’ve created an account, you may import data from a variety of sources, such as research studies you’ve participated in. You can choose to share this data with researchers, other Open Humans members, or the public. Only the recipients you’ve selected will be granted access to your personal data.
Even if you use a pseudonym for Open Humans, your data could be connected to your identity. The risk of this varies depending on the type of data, but it is often surprisingly easy to identify people.
Some examples of identifiable data you may choose to share:
We receive some information automatically when you visit Open Humans. This includes information about the device, browser, and operating system you use when accessing our site, your IP address, the website that referred you to Open Humans (if any), which pages you request and visit, and the date and time of each request you make to Open Humans.
We may retain access logs containing this data for up to 120 days, and then delete them.
Cookies are small data files placed on your computer by websites you visit in order to help them remember certain information about you.
When you log in to your account, Open Humans will place a cookie for the purposes of creating the session, knowing when you’re logged in, and validating form submissions. The cookie contains an encrypted user identifier.
Most browsers include an option to clear existing cookies or reject new ones. However, if you reject new cookies, portions of Open Humans will not function as intended.
We may use your personal information when needed to keep the site running, prevent abuse, and improve Open Humans. Your information is used internally only where necessary to provide our services.
Once you’ve created an account, you may import data from a variety of sources, such as research studies you’ve participated in. You can choose to share this data with third-party researchers, other Open Humans members, or the general public. Only the recipients you’ve selected will be granted access to your personal account data.
Before you choose to share data with third parties, please review the terms of their studies or other projects so that you understand what data they’ll access and how they’ll use, share, store, and safeguard it. Please understand that while we expect researchers to follow our Project Guidelines, Open Humans can’t control and isn’t responsible for the data handling practices of others.
Open Humans will share your non-public personal data with others only under these circumstances:
We may also share aggregate information with others – for instance, with our funders, to help them understand our community and how it uses our service.
If Open Humans or the Open Humans Foundation is involved in a reorganization, merger, acquisition or sale of our assets, your personal information may be transferred to another entity as part of that deal. If that happens, we will notify you and let you know what your options are.
You may delete your Open Humans account at any time. To do so, go to your account management page.
When you delete your account or files, they are immediately removed. Your account data is deleted in our database, as are any data files associated with your account. We may continue to retain and display some information you have made publicly available through Open Humans (comments, for example).
Because Open Humans might be the only place a member has stored highly valuable data, we also want to protect members from accidental data loss. Secure back-ups for our database and files are performed and kept in restricted storage, and are permanently deleted after 60 days.
We may revise this Data Use Policy from time to time. The most current version of the policy will govern our use of your information and will always be at https://openhumans.org/data-use/. If we make changes that we believe will substantially alter your rights, we will email you and prominently display a notice on our site 7 days before we make those changes.
Open Humans welcomes questions, concerns, and feedback about this policy. If you have suggestions for us, feel free to let us know at firstname.lastname@example.org.