The North American Center for the Study of Ethics and Health Information Technology is a nonpartisan academic and professional collaboration dedicated to education, research and service. A joint effort of the bioethics centers at the University of Miami and Indiana University, the Center includes U.S., Canadian and Mexican partners and is a sibling of the European Centre for the Study of Ethics, Law, and Governance in Health Information Technology. Link to information sheet.
University of Miami Bioethics Institute faculty have been studying the intersection of information technology and ethics for more than two decades. Some initiatives and projects incorporated under the new Center:
AMIA: Ethics and Policy
The American Medical Informatics Association is partnering with the new Center as part of AMIA’s 2016 Annual Health Policy Invitational Meeting. A special workshop, Ethics And Informatics: Challenges, Prospects, Solutions, will include presentations by representatives of the Office of the National Coordinator for Health Information Technology, the Presidential Commission for the Study of Bioethical Issues and several international organizations.
Cambridge University Press has published Ethics, Medicine, and Information Technology: Intelligent Machines and the Transformation of Health Care. Written by Prof. Kenneth W. Goodman, Director of the Miller School of Medicine’s Institute for Bioethics and Health Policy, the book attempts an overview of issues in ethics and health information technology. From the cover: “Information technology is transforming the practices of medicine, nursing, and biomedical research. Computers can now render diagnoses and prognoses more accurately than humans. The concepts of privacy and confidentiality are evolving as data moves from paper to silicon to clouds. Big data promises financial wealth, as well as riches of information and benefits to science and public health. Online access and mobile apps provide patients with an unprecedented connection to their health and health records. This transformation is as unsettling as it is exhilarating.”
Link to publisher’s website.
Cambridge Quarterly of Healthcare Ethics
A leading international bioethics journal has introduced a new section on ethics and health information technology. The section will feature original work on ethical, legal, policy and social aspects of the use of computing and information technology in health, biomedical research and the health professions. It is the goal of this section to apply CQ’s traditional standards of quality to this emerging field. Learn more.
European Centre for the Study of Ethics, Law, and Governance in Health Information Technology
The North American Center is collaborating with the European Centre for the Study of Ethics, Law, and Governance in Health Information Technology. The European Centre was launched in March 2016 at London’s Middlesex University with a co-sponsored conference, ICT in Healthcare - Legal, Ethical and Social Challenges. The European group will partner with its North American sibling on issues of international health data ethics. See also the ALERT Research Group
Personal Health Records / Project HealthDesign
Project HealthDesign, a research-and-development initiative to explore aspects of personal health records (PHR), has come to represent the first-ever project in health information technology to include an ethics component at the outset. Sponsored by the Robert Wood Johnson Foundation, the program features multidisciplinary grantee teams from across the United States. The Institute for Bioethics received RWJ support to oversee Ethical, Legal and Social Issues (ELSI) analysis for the project.
Privacy / Data Protection Project
The Privacy / Data Protection Project, ended in 2005, was a public education effort focusing on information protections in the health sector, particularly the HIPAA Privacy Rule and Security Rule. The Project’s HIPAA courses have been adapted and now are available as part of the CITI Program IPS series.
Other UM Collaborations and Initiatives
Markle Foundation: UM faculty contributed to the Markle Connecting for Health Policy Subcommittee and the Personal Health Technology Council which led to the Markle Connecting for Health Common Framework for Private and Secure Health Information Exchange, published in 2006.