Health Information, Big Data, and Privacy
The IUCB studies issues that arise from the growing capacity to collect health information from a variety of sources. Two emerging issues are the focus of current projects: how to encourage data sharing among researchers, and how to manage the larger and larger data sets (“big data”) that are beyond the scope of current regulation and policy.
The IUCB partners with the IU Center for Law, Ethics, and Health Information (CLEAR) to provide state-of-the-art policy advice to government, the private sector and other organizations. One of the key areas of study is the extent to which researchers are willing to share their research data with others – long known to be an impediment to successful science. More
For as long as there have been physicians, patients, researchers and participants, personal health information has been useful to the prevention and treatment of disease, yet the unintended disclosure of such information presents risks of discrimination, embarrassment or other harms. Getting the balance right is a key goal of bioethics researchers at the IUCB. More
Electronic health records are making massive amounts of information available to doctors, patients, administrators, and researchers. The availability of all this information promises to revolutionize healthcare but also raises thorny practical and ethical questions about how to protect patient privacy and confidentiality while also optimizing clinical care and research. Faculty of the IU Center for Bioethics develop and test approaches for easing these tensions, working with collaborators at the Regenstrief Institute, Indiana University at Bloomington, and others. More