Tired: Genetic Counseling
Wired: Genomic Counseling
Who came up with the phrase "genomic counseling"? The earliest data point I can find is from a June 2004 SACGHS Meeting, where Dr. Muin J. Khoury is quoted as saying:
"So how is NSGC [editor: The National Society of Genetic Counselors] going to or has begun to address this range of genomic information, from somatic cell to polymorphisms, and is there a role for something that we might call genomic counseling, and where does genomic counseling end and health education start, and the practice of medicine? So there is that tension between having more specialists versus integrating the genomics knowledge into the practice of daily medicine."
(If anyone knows a different provenance to this phrase, let me know in the comments or drop me a line.)
The question of where the hand-off is from the education (or counseling) of consumers about genomic data to the integration of this information into medical/clinical care is a good one. In my mind, the answer to that question depends on the type of information genomic data can provide, i.e. whether the information is clinician-centric or consumer-centric.
Some types of information will be actionable only by the clinician,
e.g. genetic testing to determine warfarin dosing.
While other types of information will be more
relevant to the actions of the consumer, e.g. CF carrier screening by couples planning a pregnancy.
There are also types of genomic data that create actionability somewhere in-between, i.e. where a clinicians actions should take into consideration a patient’s preferences. A good example is genetic testing for irinotecan dosing, where this genomic data should inform the dosing, in light of the patient’s preference for aggressive treatment versus toxicity risk (see the excellent interview with Howard McLeod about this issue).
Even when genomic information is clinician-centric, there will remain (for the foreseeable future) a role for the patient in creating physician awareness about how this information may influence patient care. Nobody is more interested a therapeutic outcome than the patient who is at risk. For this reason patients will continue to be — and increasily will become even more — informed about their care. In terms of recent genetic testing history, there have been more than one study (or this one) showing that the number one predictor of whether a physician orders a genetic test is patient demand.
Another question for genomic counseling: What is the likely format? Face-to-face? Probably not.
An Interview with Howard Mcleod. To Test or Not Test: An Update on UGTA1T1 Testing. Oncology Issues, Nov/Dec 2006. (PDF)
Wideroff L et al. Physician use of genetic testing for cancer susceptibility: results of a national survey. Cancer Epidemiol Biomarkers Prev. 2003 Apr;12(4):295-303.
Sifri R. et al. Use of cancer susceptibility testing among primary care physicians. Clin Genet. 2003 Oct; 64(4):355-60.