One of the key aims of the Columbia University Center for Bioethics is to advance awareness of current and perplexing issues in research ethics. To operationalize this aim, the Current Issues in Research Ethics (CIRE) Program was initiated, funded by a National Institutes of Health (NIH) T-15 education and training grant. This grant focuses on two topics of great importance to the research community: privacy and confidentiality and conflicts of interest. We hope to stimulate new reflection and insight into their ethical, legal, and policy implications.
In recent years, the topics of privacy and confidentiality and conflicts of interest have become increasingly complex and contentious. The information explosion seen with the unraveling of the human genome, issues surrounding the proliferation of data banks and tissue repositories, and the increasing reliance and availability of online information are threatening individual and group privacy. As more university-industry partnerships are established, critical questions are arising regarding conflicts of interest for individual researchers, Institutional Review Board (IRB) members, and research institutions. New regulations and guidance have been proposed and, at times, enacted (e.g., the Health Insurance Portability and Accountability Act, known as HIPAA). Now, many within the research community are eager to obtain the most current information to promote understanding of their new responsibilities designed to protect the rights and ensure the welfare of research participants.
Individuals in the research community, including physicians, researchers, research staff, IRB members, research administrators, students, and all others involved in promoting ethical research, are our primary audience. Through collaborative efforts with local institutions and national organizations, the CIRE Program is sponsoring a series of short courses in research ethics in an effort to provide a forum for the research community to fill gaps in knowledge and understanding by collectively exploring current issues and promoting mutual learning. Critical aspects of privacy and confidentiality such as informed consent issues with vulnerable populations, ramifications of HIPAA, third party consent, genetic privacy, use of the Internet for research, and conflicts of interest at varied levels are among our areas of focus.
Our Educational Activities
Over the three years of the award, which began in 2002, the CIRE Program is developing, implementing, and evaluating four day long educational programs. On May 30, 2003, the CIRE Program hosted its first research ethics conference at Columbia University entitled Privacy and Confidentiality and Conflicts of Interest: Keeping Pace with Research Practice.
On March 11, 2004 the CIRE Program, in collaboration with the Harlem Hospital Center, sponsored its second conference entitled Unique Research Communities: Privacy and Confidentiality, Patients' Rights, and Communication.
A state-of-the-art, three-day national conference was held in Boston, May 3-5, 2004 in collaboration with Public Responsibility in Medicine and Research (PRIM&R) entitled Conflicts of Interest, Privacy/Confidentiality, and Tissue Repositories: Protections, Policies, and Practical Strategies.
Conference materials are currently available for public viewing.
Our upcoming conference on November 15, 2004 is in collaboration with St. Luke’s-Roosevelt Hospital Center. The conference, entitled Current Issues in Research Ethics: Tissue and Data Repositories, Conflicts of Interest, and Student & Trainees in Research, will explore various issues related to genetic privacy, financial and non-financial conflicts of interest, students and trainees as investigators and research participants, and mentoring. One additional, local conference will be offered in 2005.
"Spaced-practice learning" is an important strategy to promote adult instruction and education. The CIRE Web site's bi-monthly, case-based Ethics Challenge is an example of that type of learning. Cases relate to our topics of privacy and confidentiality and conflicts of interest.
The CIRE Program, with support from the Office of Research Integrity (ORI), is producing a series of E-Seminars for a wide Internet audience to access. The first E-seminar, Conflicts of Interest, is available for viewing on the Web. The second, Privacy and Confidentiality, is under construction.
with the Columbia University Center for Bioethics, the CIRE Web site
provides a broad array of useful Links/Resources
that are of great benefit to the research community.