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.

The Information We Collect

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.

Below is a more detailed explanation of the information we collect and use.

Information We Collect Directly From You

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.

Once you’ve registered with Open Humans, we’ll ask you to create a user profile. The profile includes your name, your username, and you can add a profile picture and any other information you like in the “About Me” field.

As long as you follow our Naming Guidelines, you’re free to choose a pseudonym as your name and username.

A note about inherent identifiability of your data

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:

  • Demographic data. Just three pieces of information – your birth date, sex/gender, and ZIP code – are enough to uniquely identify most individuals. If you share these, someone may use them to figure out who you are.
  • Genetic data. Your genome data can be used to learn about your ancestors, and this information can be used to identify you. For example, a man’s Y chromosome can be used to predict his last name (or “family name”) – this method has been used to identify individuals from “anonymous” genomes. Identifying people from genetic data is likely to get easier as genealogy tools become more powerful.
  • Location data. Even a tiny amount of location data is enough to give a strong clue to someone's identity. Most people spend their time in two locations: work and home. That combination is often unique, and could be used to identify you.

Information We Automatically Collect

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.

Cookie Policy

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.

How We Use or Disclose Your Information

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.

We will share your non-public personal data with others only under these circumstances:

  • with your consent, and after letting you know what information will be shared and with whom, unless it is otherwise permitted in this policy.
  • if we believe it is reasonably necessary to comply with a law, regulation, or valid legal process. If we are going to release your information, our policy is to provide you with notice unless we are prohibited from doing so by law or court order (e.g., an order under 18 U.S.C. § 2705(b)). However, we may disclose your information without providing you with prior notice if we believe it’s necessary to prevent imminent and serious bodily harm to a person.
  • to third parties helping us offer and improve our service, such as those providing Open Humans technical tools and analytics services that help us understand how people use our service. We require those companies to observe the limitations in this data use policy.
  • in rare cases, if you’re a participant in a study operated by Open Humans, with the Institutional Review Board (IRB) that oversees that study.

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.

Account Disabling

You may disable your Open Humans account at any time. This means your user profile will no longer be visible on our site, and other Open Humans users will no longer have access on our site to the personal data you’ve shared with them.

We may also continue to display some information you have made publicly available through Open Humans (comments, for example).

Changes to This Policy

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.

Contact

Open Humans welcomes questions, concerns, and feedback about this policy. If you have suggestions for us, feel free to let us know at support@openhumans.org.