Mary McCabe, meeting organizer and head of NCI's Office of Clinical Research Promotion, said the key is balancing the calls for privacy which include the Department of Health and Human Services' proposed standards for all medical records, released last fall with the needs of researchers.
To that end, McCabe prepared a draft of what she calls "best practices" for ensuring confidentiality of research records. Major points discussed at the meeting:
How to equally protect all types of medical information paper and electronic files, tissue and blood samples, and DNA data.
How to keep all patient data anonymous unless absolutely necessary for a specific research project.
How to design training programs for researchers and research assistants who handle confidential patient data.
Whether patient consent forms will disclose exactly how patient-identifiable data will be used.
Whether patients will have the right to look at their own research data.
Five working groups, comprising experts in the areas of tissue specimen research, clinical trials, research databases, epidemiology, and genetics, ended the two-day meeting by critiquing the draft.
McCabe said that next steps include incorporating the working groups' comments into final recommendations and determining what role, if any, the NCI will play in enforcing the guidelines.
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