University of Miami Bioethics Institute faculty have been studying the intersection of information technology and ethics for two decades. Some recent projects:
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.
Public Health Informatics
Epidemiology and public health are no longer possible without large data bases and expertise in developing and using software to query them. Real-time and continuous data acquisition and analysis are increasingly essential for the success of surveillance and tracking initiatives, and for work in noncommunicable disease monitoring and analysis.
Although the past quarter century has seen solid progress in the identification and elaboration of ethical issues in epidemiology and public health, it has neglected the importance of computer and information processing technology in eliciting and shaping those issues. From the privacy of individuals and groups and trade-offs to improve public health, to the challenging distinction between surveillance and research and the controversial concept of “secondary use,” public health informatics is coming of age as a source of interesting and important ethical issues.
The issues are magnified in complexity and importance in international contexts, as for instance when trans-national data bases are linked or national ones concatenated. Thorny ethical issues will not be resolved by advocacy or the exercise of authority. UM Bioethics Institute faculty have contributed to efforts to address these issues in the the following:
Goodman KW. Ethics, Medicine, and Information Technology: Intelligent Machines and The Transformation of Health Care. Cambridge: Cambridge University Press, in press.
Goodman KW, Meslin EM. Ethics, information technology and public health: Duties and challenges in computational epidemiology. In Magnuson, JA, Fu, PC, eds., Public Health Informatics and Information Systems, Second Edition, London: Springer-Verlag, 2014, 191-209 (wholly revised from 1st Ed., 2003).
Massoudi BL, Goodman KW, Gotham IJ, Holmes JH, Lang L, Miner K, Potenziani DD, Richards J, Turner AM, Fu PC. An informatics agenda for public health: summarized recommendations from the 2011 AMIA PHI Conference. Journal of the American Medical Informatics Association 2012;9(5):688-695.
Middlesex University, London
We’re collaborating with a team at MIddlesex, including joint sponsorship of “eHealth - Legal, Ethical and Social Challenges,” an October 2014 workshop; and with 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 Ethics Programs received a grant to oversee Ethical, Legal and Social Issues (ELSI) analysis for the project. UM Ethics Programs deliverables.
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.