Science Initiative Privacy Principles
Last Updated: March 20, 2018

We launched our science program in September 2016 with the mission to support the science and technology that will make it possible to cure, prevent, or manage all diseases by the end of this century. We believe that scientific collaboration is key to achieving breakthroughs that can help all our communities stay healthy and reach their full potential. We are committed to accelerating the pace of science by:

  • making data openly accessible and collaboratively developing open-source solutions;

  • making IP generated by a CZI’s science team or a CZI-supported investigator or research project freely available for academic and noncommercial use;

  • developing and using platforms that disseminate data openly and freely;

  • releasing software under maximally permissive open-source licenses, and developing software collaboratively in the open;

  • supporting full publication without conditions or restrictions on academic and publication freedom; and

  • depositing manuscripts (by CZI science team, collaborators, or grantees) as preprints before peer review to increase access to research findings and to communicate results more quickly.

At the same time, we understand that some of the data that we and our collaborators work with can be sensitive. In working to support innovative research models that allow scientists and engineers to make long-term progress on biomedical problems, we, or our collaborators, may collect, process, and share information about human health, biology, environments, and behavior from research participants — who are also our collaborators in this work. Ensuring that our work does not adversely impact the individuals whose information is so crucial to advancing our mission is paramount – first do no harm remains a guiding principle.

In our commitment to appropriately protect the privacy rights of all individuals, we follow these Privacy Principles.

Privacy Principles

  • We will be transparent about the data we collect and use. We may update our principles and policies as our work evolves, but we will maintain our commitment to openness and transparency.

  • We will use data only in accordance with the consent given. We work only with human tissue and other patient information that are properly consented upon collection, and we use those resources only within the parameters of that consent—even as our goal is to enable open sharing of the data in accordance with laws and regulatory requirements. We also require that our partners have appropriate consent documentation.

  • We will not own personal information we receive or collect from collaborators. We support expert investigators in basic biomedical science research, and in many cases, work with them to better understand and analyze the data that they have collected.

  • We will never sell personal information. If we share information, we will only do so with appropriate consents.

  • We will build security and privacy protections into our tools by design. We will use security industry best practices to protect personal information, including using encryption and other security safeguards to protect personal information. This means designing tools with security and privacy in mind from day one.

  • We will protect sensitive data. If we are involved in collaborations involving data requiring protection or controlled access, we will work with regulatory groups to ensure that they are handled in a controlled and proper way in agreement with national and international standards.