Ethical, legal and social consultancy for RWJF's Project HealthDesign sites

The grant supports the University of Miami Ethics Programs, led by Kenneth W. Goodman, Ph.D., founder of the Ethical, Legal and Social Issues (ELSI) Working Group at the American Medical Informatics Association, to be the primary ELSI consultants for the Foundation's Project HealthDesign. The primary focus of Project HealthDesign is to develop a diverse array of innovative applications for personal health records. Through the development of these applications, a common platform for a personal health record can be shaped. While Project HealthDesign can advance technology, increase collaboration among researchers and improve the ability to self-regulate health, this emerging field generates many questions about the ethical, legal, and social issues related to personal health records.The Miami Ethics Programs will consult with the eight members of the Project HealthDesign research team on the following issues: (1) protecting the privacy of sensitive, patient-identifiable health information; (2) role of technical standards in contributing to standards of care; (3) alterations in role and autonomy of clinicians; insuring therapeutically efficacious provider-patient relationships while developing patient-centered innovations; (4) appropriate use of personalized behavioral tracking information; and (5) sale of personal health information for research or other purposes.In order to address these and other ELSI issues, the grantee has assembled a team of experts and resources. While the consultation will be one component of their deliverables, the Miami Ethics Programs also intend to develop materials for the broader ELSI community.

Grant Details

Amount Awarded $149,190.00

Awarded on: 12/4/2006

Time frame: 12/1/2006 - 2/28/2009

Grant Number: 59879


University of Miami

1252 Memorial Drive
Coral Gables, 33146-2509


Kenneth W. Goodman
Project Director