Ethics of the UDN
Ethics Statement
The UDN follows rules and laws to keep people safe when they do research. A special group, called the Institutional Review Board (IRB), reviews the UDN’s research to make sure it protects the rights and safety of the people who participate. The UDN protects privacy and makes sure people understand what they agree to.
Participants who join the UDN often have not been able to get a diagnosis for a long time. The UDN explains the difference between research and regular medical care, so people know what to expect.
The UDN also works with the Undiagnosed Diseases Network Foundation (UDNF) and its Participant Engagement and Empowerment Resource (PEER) group, which includes participants and caregivers. The UDNF and PEER help the UDN make the best choices about how they do research, talk to participants, and share information.
Key Values
Respect and Fairness
The UDN values every participant’s story and aims to listen with care. Team members share information honestly and explain decisions and next steps as clearly as possible. The UDN treats all participants fairly, no matter their background, and works to include families from many different communities.
Privacy and Data Protection
The UDN follows strict privacy and security guidelines. Only trusted team members who need personal or medical information for care or research have access to it. The UDN shares information outside the team only with permission.
Clear Communication
Participants and families receive information about what might happen, why it matters, and possible risks before any study or test starts. There is time for questions and decisions. Participants can join or leave the study any time.
Responsible Research
When the UDN is researching new technologies, the team reviews how these may affect participants and families. The UDN focuses on safety and making decisions that protect participant rights.
Oversight
The UDN is committed to strong oversight of its research. All UDN institutions use a single Institutional Review Board (IRB), which means that the same ethical standards are used everywhere. Ethicists are also involved in UDN research, helping the network look at each decision from many perspectives and protect participants.
Participant Involvement
The UDN values direct input from participants and families. Through PEER (Participant Engagement and Empowerment Resource), participants have a voice in making decisions and guiding the network. This means that people with lived experience help make UDN policies, set research priorities, and guide how the network supports future participants and families.
More Information
More details about the UDN’s approach are in the UDN Manual of Operations.
Email: UDN@hms.harvard.edu
Phone: (844) 746-4836
More information about PEER can be found on the UDNF website.