Switch to: References

Add citations

You must login to add citations.
  1. The Perils of Parity: Should Citizen Science and Traditional Research Follow the Same Ethical and Privacy Principles?Barbara J. Evans - 2020 - Journal of Law, Medicine and Ethics 48 (S1):74-81.
    The individual right of access to one’s own data is a crucial privacy protection long recognized in U.S. federal privacy laws. Mobile health devices and research software used in citizen science often fall outside the HIPAA Privacy Rule, leaving participants without HIPAA’s right of access to one’s own data. Absent state laws requiring access, the law of contract, as reflected in end-user agreements and terms of service, governs individuals’ ability to find out how much data is being stored and how (...)
    Download  
     
    Export citation  
     
    Bookmark   2 citations  
  • Ethics of ‘Counting Me In’: framing the implications of direct-to-patient genomics research.Tenny R. Zhang - 2024 - Journal of Medical Ethics 50 (1):45-49.
    Count Me In (CMI) was launched in 2015 as a patient-driven research initiative aimed at accelerating the study of cancer genomics through direct participant engagement, electronic consent and open-access data sharing. It is an example of a large-scale direct-to-patient (DTP) research project which has since enrolled thousands of individuals. Within the broad scope of ‘citizen science’, DTP genomics research is defined here as a specific form of ‘top-down’ research endeavour developed and overseen by institutions within the traditional human subjects research (...)
    Download  
     
    Export citation  
     
    Bookmark