Yesterday, I attended a meeting of the Personalized Medicine Coalition. As defined by the President’s Council on Advisors on Science and Technology, “Personalized Medicine” refers to the tailoring of medical treatment to the individual characteristics of each patient…to classify individuals into subpopulations that differ in their susceptibility to a particular disease or their response to a specific treatment. Preventative or therapeutic interventions can then be concentrated on those who will benefit, sparing expense and side effects for those who will not. In English: At this point seems like mostly genetic markers (referred to as variances) that point to specific treatments for some cancers. Helps the doc pinpoint chemo for a specific genetic make up of some cancer cells. The field is young. 13 examples of personalized medicine in 2006, 72 in 20011.
I found a group of scientists, clinicians, pharm reps, patient advocates, investors, and insurance companies. Very aspirational – full of the potential and possibilities of personalized medicine – much like the aspirations of big data and mobile health technology. Some meat, lots of motion. Well funded.
I was curious about how the patient was involved in #PersonalizedMedicine. Met @JackWhelan, an e-Patient who benefits from #PersonalizedMedicine – saving his life! Also met Brett Johnson @waroncancer from the International Cancer Advocacy Network. Genetic counselors work with patients. Sometimes the genetic testing discovers a variance without an associated treatment. A dilemma is whether to contact the patient/physician in the future as more information is learned. Researchers are challenged to go back to extract longitudinal data (data over time from the electronic medical record) from those patients with the newly discovered marker/variance. I didn’t find researchers/scientists well integrating e-Patients into their research process – but my sample was small.
An exciting area to keep tabs on. Do any of you have experience with #PersonalizedMedicine?
Personalized medicine is at the frontier of health care. The very best clinical molecular labs are developing programs that update molecular results as variants of “unknown significance” become “significant.” However, the ethical considerations of sequencing and incidental findings( those unrelated to the reason for testing, but potentially actionable) continue to consume massive debate. Consider, for example, the finding of a genes related to breast or colon cancer in an infant? What to do?
Thanks ME