If ever there were an area of medicine that is appropriate for lifelong learning, it is genomics, the study of the functions and interactions of all the genetic material (DNA) belonging to an organism, including interactions with environmental factors to understand the root causes of disease and to better understand how an organism works. Because it is a young and quickly evolving field, it is difficult to precisely determine either the genomic knowledge or the clinical application of that knowledge that will be required for healthcare providers in the future.
What is clear is that the practice of “genomic medicine” will require the implementation of educational tools by which the health-care workforce can begin to shrink the gap between genomic knowledge and its application to patient care. Eric Green, the current Director of the National Human Genome Research Institute at NIH, puts a fine point on the tremendous potential of genome knowledge to affect the future of health care when he writes, “Primary care providers are the front lines in what will have to be an integrated and collaborative model for using genomic advances to enhance patient care.”
Turning that potential into reality, however, will not be easy. More effective genomics education of all health care providers will be key to the effort.
It will soon be possible to have our complete genome sequenced for $1,000 or less, and there will be strong interest in having that information determined and then placed in a private part of our medical record to inform decision making. The health care workforce will need to be prepared to know how to incorporate that information, in a rational fashion, into prevention and treatment, not to mention implementing online strategies for protecting the privacy of that information. In that latter regard, geneticist, Daniel MacArthur, in his new blog, (and summarized in an expanded version) suggests that “…doing good science means releasing complete data for others to investigate,” and that “the whole notion of genetic privacy is illusory anyway.”
While I’m not willing to entirely concede this point based on Oregon’s long history of public discussion about genetic privacy, and continuing modification of Oregon law in the wake of the Genetic Information Non-Discrimination Act (GINA) I do agree with MacArthur that “…many of the fears expressed about the dangers of genetic information are exaggerated,” and that much more “…constructive public discussion about the truth behind these fears” is needed.
However, without making the issue of genetic exceptionalism the center of such discussions — and arriving at some legislative consensus about that issue, once and for all, especially in the minds of patients, thinking (and practicing) genomic medicine will never be fully realized.
Gregory Fowler, PhD