Center for Law, Ethics and Applied Research in Health Information
Center for Law, Ethics, and Applied Research in Health Information (CLEAR) researchers are actively pursuing information on a range of topics, including use of big data by genomics researchers. These accomplished investigators publish regularly in leading medical, academic and other scholarly publications. They also generate dozens of reports, presentations and book chapters.
Big Data Use by Genomics and Health Informatics Researchers
Indiana Patient Notification Pilot Study
Health Innovation Privacy
OECD Collaboration/Risk Project
Privacy Concerns of Peer-Based Home-Based Technologies
Rare Disease Project
Comprehensive Health Regulations Project
Health Information Mapping Project
Centerstone Research Institute Collaboration
Protecting Privacy in Health Research Project
Information and Intellectual Property Issues in Health Innovation (HI4)
CLEAR NIH panelist authors report backing health info de-identification
A joint paper from Ann Cavoukian, PhD, and Khaled El Emam, PhD, validated that, contrarty to claims of easy re-identification of personal health data used for research, anonymizing data is a reliable, safe and practical way to protect personal information. The paper entitled, “Dispelling the Myths Surrounding De-Identification: Anonymization Remains a Strong Tool for Protecting Privacy” showed that the re-identification of properly de-identified information is not, in fact, an easy or trivial task, and rather requires concerted effort on the part of skilled technicians. De-identification is a vital first step in protecting privacy, by drastically reducing the risk that personal information will be used or disclosed for unauthorized or malicious purposes.
Cate, F.H. Protecting Privacy in a World of Big Data: The Role of Risk Management, Centre for Information Policy Leadership (2015).
Cate, F.H. “The data protection credibility crisis,” International Data Privacy Law, vol. 5, no. 3 at 161 (2015) (with C. Kuner, C. Millard, D. Svantesson & O. Linskey)
Campbell, B., Caine, K., Connelly, K., Doub, T., & Bragg, A. Cell Phone Ownership and Usage Among Mental Health Outpatients in the US. Personal and Ubiquitous Computing 19, no. 2 (2015): 367-378.
Connelly K, ur Rehman Laghari K, Mokhtari M, Falk T, H, Approaches to Understanding the Impact of Technologies for Aging in Place: A Mini-Review. Gerontology 2014; 60:282-288
Garg, Vaibhav, L. Jean Camp, Lesa Lorenzen-Huber, Kalpana Shankar, and Kay Connelly. Privacy concerns in assisted living technologies. In annals of telecommunications-annales des télécommunications 69, no. 1-2 (2014): 75-88.
Welch, J. L., Astroth, K. S., Perkins, S. M., Johnson, C. S., Connelly, K., Siek, K. A., Jones, J. and Scott, L. L. (2013), Using a mobile application to self-monitor diet and fluid intake among adults receiving hemodialysis. In Journal of Research in Nursing Health, 36: 284–298. doi: 10.1002/nur.21539Update
Daniel O Kutz, Kalpana Shankar, Kay Connelly (2013). Making sense of mobile and web-based wellness information technology: a cross-generational study. In Journal of Medical and Internet Research (JMIR), 15:5. http://www.jmir.org/2013/5/e83/
Jane Kaye, Eric M. Meslin, Bartha M. Knoppers, Eric T. Juengst, Mylène Deschênes, Anne Cambon-Thomsen, Donald Chalmers, Jantina De Vries, Kelly Edwards, Nils Hoppe, Alastair Kent, Clement Adebamowo, Patricia Marshall, and Kazuto Kato. ELSI 2.0 for Genomics and Society, Science , 2012
K. Shankar, L. Jean Camp, Kay Connelly, L. Lorenzen-Huber. Aging, Privacy, and Home-Based Computing: Development of a Framework for Design, IEEE Pervasive Computing, 2012
Fred H. Cate (with Viktor Mayer-Schonberger) Notice and Consent in a World of Big Data, Technology Academics Policy Blog, 2012
Kay Connelly, K.A. Siek, B. Chaudry, J. Jones, K. Astroth, J.L. Welch. An Offline Mobile Nutrition Monitoring Intervention for Varying Literacy Patients Receiving Hemodialysis: A Pilot Study Examining Usage and Usability, Journal of the American Medical Informatics Association, 2012
J.L. Hall, R.J. Palacio, Eric M. Meslin. Genetics and Coronary Heart Disease, Coronary Heart Disease: Clinical, Pathological, Imaging and Molecular Profiles, 2012
A.U. Mutsuddi and Kay Connelly Text Messages for Encouraging Physical Activity: Are They Effective After the Novelty Effect Wears Off?, Pervasive Computing Technologies for Healthcare (PervasiveHealth), 2012
Fred H. Cate (with Viktor Mayer-Schonberger). Notice and Consent in a World of Big Data, Microsoft Corporation, 2012
D. Croft, S.J. Jay, Eric M. Meslin, M.M. Gaffney, J.D. Odell. Perspective: Is It Time for Advocacy Training in Medical Education?, Academic Medicine, 2012
K. ur Rehman Laghari, N. Crespi, and Kay Connelly. Towards Total Quality of Experience: QoE Model in Communication Ecosystem, IEEE Communications Magazine, 2012
R.K. Pappas, B.N. Gakinya, S. Martino, J.B. Baliddawa, K.J. Bryany, Eric M. Meslin, J.E. Sidle. Ethical Issues in a Stage 1 Cognitive-behavioral Therapy Feasibility Study and Trial to Reduce Alcohol Use Among HIV-infected Outpatients in Western Kenya, Journal of Empirical Research in Human Research Ethics, 2012
Chadwick, R; Ten Have H; Meslin, EM. Health Care Ethics in an Era of Globalization, The SAGE Handbook of Health Care Ethics, 2011
Hazelwood, W; Connelly, K; and Stolterman, E. Issues of Evaluating Ambient Displays In the Wild: Two Case Studies, CHI, 2011
Were, MC, and Meslin, EM. Ethics of Implementing Electronic Health Records in Developing Countries: Points to Consider, AMIA Annu Symp Proc. 2011, 2011
Beenish, C; Connelly, K; Siek, K; Welch, Janet. The Design of a Mobile Portion Size Estimation Interface for a Low Literacy Population, 5th International Conference on Pervasive Computing Technologies for Healthcare, 2011
Cornetta, K; Meslin, EM. Ethical and Scientific Issues in Gene Therapy and Stem Cell Research, The SAGE Handbook of Health Care Ethics, 2010
Meslin, EM; Schwartz, PH. To Be Or Not To Be–A Research Subject?, Surviving Health Care: A Manual for Patients and Their Families, 2010
Cate, Fred H. Protecting Privacy in Health Research, California Law Review, 2010
Meslin, EM. The Value of Using Top-Down and Bottom-Up Approaches for Building Trust and Transparency in Biobanking, Public Health Genomics, 2010
Meslin, EM. Problem Solvers: What to Expect from Our New Bioethics Commission, Science Progress, 2010