Privacy and Confidentiality

This chapters explores a variety of issues related to protecting privacy and confidentiality in research including the moral and legal basis for privacy and confidentiality; the relationship between trust and privacy and confidentiality; the difference between privacy and confidentiality; the Privacy Rule of the Health Information Portability and Accountability Act (HIPPA); the European General Data Protection Regulation; methods and strategies for protecting privacy and confidentiality; the conflict between sharing data and biospecimens and protecting privacy and confidentiality; data security, data use agreements; the difference between identified and de-identified data and biospecimens; the Tarasoff case; privacy in genetic and genomic research involving family members; reporting of suspected abuse and neglect of children or vulnerable adults; and reasons for breaching privacy and confidentiality in some situations. The chapter also argues that recognizing the importance of trust in research can provide investigators with useful guidance and help solve some ethical dilemmas involving privacy and confidentiality.