According to the National Society of Genetic Counselors, genetic counseling is:
“the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease.”
But a commentary in Science Magazine indicates that these admirable goals are unachievable. It turns out that patients given genetic information on predisposition to disease don’t really care. Consequently, they are unlikely to do any changes to their lifestyle based on the test-results. Behavioral epidemiologist Colleen McBride and human geneticist Lawrence Brody are quoted saying:
“They’re not having big emotional
And subsequently the author concludes that:
“Behavioral specialists have shifted from
worrying about the devastating effects of
learning about these new genetic risks to
wondering whether the information will
make any impression at all.”
The REVEAL study (by way of Genomeboy) modifies the picture slightly on the willingness to change lifestyle based on test results from APOE, but confirms the lack of distress or anxiety resulting from test results. The REVEAL study was designed to measure:
- Who seeks genetic counseling and why
- How APOE disclosure affects risk perceptions
- The psychological impact of genetic risk assessment
- How risk information affects participants’ subsequent health and insurance behaviors.
Where the findings included:
- Disclosing APOE status and its association with Alzheimer’s risk to participants did not result in a significant increase in distress or depression.
- Participants who discovered they had the high risk APOE e4 allele proved more likely to be proactive in changing their lifestyles and planning for long term care.
- A majority of participants reported that REVEAL had made a positive impact on their lives (67% positive vs. 17% negative).
- Participants were more likely to report lower, rather than higher, anxiety about Alzheimer’s disease as a result of being tested (43% lower vs. 11% higher)
Thus, it seems the fear of damage caused by genetic test results is unwarranted or at least highly exaggerated. So, the question is: is there still a need for genetic counselors to ease distress ?
Yes one might answer, since genetic counseling is still needed to interpret the result. … – But,
In addition to the well known test for BRCA1, genetic tests are increasingly emerging that will give clear cut answers. Additional examples are colon cancer and lung cancer if you are a smoker. Understanding the technology behind the test becomes less important when test-results leads to unambiguous recommendations. No need to know what a SNP is if having it gives you a disease risk of 80-90 %. Thus, counseling to explain the problem of uncertain statistical probabilities may soon be obsolete.
If the risk turns out to be less than 80-90 % (and consequently less reliable for a physician as a proper pre-diagnostic test), according to the piece from Science magazine: it looks like nobody will care. If this is the case, genetic counseling for tests associated with medium to low risk becomes superfluous.
As an alternative then, I would suggest that genetic counselors turn their focus towards relieving group damages from genetic testing. That may be the life saver for a group of professionals once thought to have a bright future, now facing a dim/boring one.