Letter: Peas, Priorities and Primary Care: Cultural competency starts at home.

To the Editor: On January 27 and 28, 2005, I attended my first annual meeting of the National Coalition for Health Professional Education in Genetics (NCHPEG). The other attendees were from diverse academic, governmental, and industry settings and shared a common goal of promoting the importance of genetic issues in health care. As a practicing primary care physician in the United States with an interest in the role of genetics in primary care and a Ph.D. in Human Genetics, I found the presentations enlightening, as well as disturbing. “Focus on Family History” was the theme for this year’s meeting, a topic garnering national attention since the unveiling of the Family History Initiative by the U.S. Surgeon General last November.1 The basic idea of the initiative is to elevate public awareness of the role family history plays in determining risk for many common disorders. An increase in awareness is hoped to spur individuals to gather their family histories and to motivate them to seek their physician’s aid in mitigating disease risk. A secondary intent is to stimulate clinicians’ interest in the role of genetics in their practices. The impetus for this initiative is very reasonable: several disorders of major public health impact have a clear genetic component (for example, coronary heart disease, colon cancer, breast cancer, and diabetes) and early identification of elevated risk may permit early intervention and reduction of subsequent disease risk. The content of the meeting left no doubt that the primary care community is ill prepared to deal with genetics issues. It was striking that there was also an undercurrent of incredulity among meeting attendees and presenters that primary care physicians don’t see the clear need (at least from the geneticists’ perspective) to become better versed in the health improvement tools that the genetics community has to offer. Several speakers presented rigorously gathered data regarding the barriers the genetics community faces in getting their message to primary care. Identified barriers might be distilled to three central themes: lack of genetics knowledge and resources, lack of perception of the relevance of genetics to daily practice, and lack of time in a busy office setting. I propose that a fourth overarching barrier must be overcome before the genetics community will have its voice meaningfully heard in primary care. This barrier is, to borrow a popular term in academic medicine, a lack of cultural competency. Predictably, the genetics community views, describes, and interacts with the world through a lens of genetics. This lens distorts the geneticists’ perspective on priorities in primary care, and results in a presentation of genetics priorities in a language and “cultural context” that primary care physicians don’t understand. As with issues between ethnic, racial, and cultural groups, a deadly trap must be avoided by both genetics and primary care communities, the lack of immediate adoption of each other’s priorities and values does not connote ignorance and lack of sophistication. One particular presentation had examples of how easily well intentioned research designed to bring genetics and primary care closer together might actually worsen the situation. The presenter shared preliminary data from interviews of rural, suburban, and urban primary care physicians regarding the role of genetics in their practice. In addition to aggregate data from carefully analyzed interview transcripts, the speaker also presented quotes from practicing doctors. Several of these quotes brought gasps of horror from attendees, ostensibly because they found them hopelessly naive in the age of genomics. The audience reaction to two quotes in particular drove home the fact that the trap of assuming ignorance without understanding culture looms large. I will paraphrase the quotes. First, a provider stated that he was not interested in being an early adopter of genetics tests for familial cancer syndromes because he did not want to be the first one on the block offering a new test. Second, a provider was quoted as saying that he thought there was genetic testing available for breast cancer syndromes, and that he vaguely remembered that there might be similar testing available for familial colon cancer syndromes. As these were direct quotes from a phone interview, the language was not very formal, further engendering a feeling that the physicians were less than sophisticated (much as happens with certain politicians). As a primary care physician, I feel compelled to examine these two quotes in more detail, flushing out the cultural context in which they may have been made. First, take the quote regarding not wanting to be an early adopter of genetic testing and technology. To the geneticist, tests for hereditary breast and ovarian cancer syndrome and the familial colon cancer syndromes have been around for quite some time (about a decade), have reasonable sensitivities and specificities, have fair predictive values, and have ample evidence supporting improved outcomes for their use (typically studies of interventions in mutation positive individuals in families with high burdens of disease). The primary care physician, on considering these tests, may recall the story of prostate-specific antigen (PSA) testing. PSA testing has been around for decades, was originally (and still is) promoted by a specialty community as having an acceptably high sensitivity and specificity, and had some level of evidence that outcomes might be improved through its use (detecting and curing early prostate cancer). Years and many studies later, the utility of this test remains an extensive source of debate in the primary care community, and is not supported as an essential part of routinely offered health care.2,3 Given that the promotion of cancer genetics testing has not been presented in the language of evidence-based medicine to those in primary care, it is no wonder that many are reluctant to quickly assimilate these technologies into their practices. Second, consider the quote relating a less than confident recollection of the availability of testing for breast and colon cancer syndromes. To the academic geneticist, the quoted individual must seem perilously out of date. As a primary care provider, I propose that the lack of knowledge (and the lack of interest in the topic it suggests) is less a product of neglect and l e t t e r s t o t h e e d i t o r October 2005 Vol. 7 No. 8