WASHINGTONA survey has found that breast cancer researchers
largely support legislation to minimize the risk of
exploitation of medical information by commercial sources and
otherwise adequately protect patient privacy. However, they
also are concerned about unbridled privacy laws that
would delay or discourage scientific progress through quality
The 11-question survey, conducted by the Susan G. Komen Breast Cancer
Foundation, was mailed to 1,100 researchers, 214 (19.5%) of whom
responded. The researchers could answer the questions with or without
additional comments, or they could offer comments on the questions
without answering them.
A summary of the survey was distributed at a congressional briefing
sponsored by the National Coalition for Cancer Research (NCCR).
The survey revealed a somewhat surprising emphasis by
researchers on the need for patient protection by way of privacy
legislation, the Komen Foundation summary said. There was
general consensus that federal privacy laws must balance an
individuals right to privacy against the need to understand
diseases and the efficacy of treatments across broad
Among survey respondents, 61.2% said they have used medical data that
could identify a patient in their work, but 52% of all respondents
said that personally identifiable patient information was not
essential to their research.
Those surveyed included clinical, basic, translational,
quality-of-life, and epidemiologic researchers; 38% said they have
conducted or are currently conducting more than one type of research.
Sixty percent of the respondents were generally familiar with the
medical records privacy issue; 30% had some knowledge, and 10% said
they had no knowledge.
Asked whether their state had enacted legislation relating to the
privacy of patient records, 73% said they were unsure. Almost half
(47.2%) had little knowledge of proposed federal patient privacy
legislation; 32.7% had some familiarity with bills pending in
Congress, and 20.1% were unaware of any proposed new laws.
On the issue of national vs state regulation of patient privacy,
59.8% of the researchers favored broad preemption of state privacy
laws by federal legislation. These were generally researchers who
have conducted or routinely conduct multistate and multi-institution
research, the Foundation said.
Of the 21% of researchers who opposed federal preemption, most
expressed concern that more federal involvement would cause
researchers inflexible and undue burdens. This may suggest that
if federal privacy legislation was not unduly burdensome, these
respondents might be in favor of such legislation, the