It’s a stressful life of shifting seasons, of waiting, gratifying milestones, striving, joys and some sorrows. It can be a crazy, but it’s the only life you’ve got, and it’s yours.
You’re busy trying to make the most of it, making relationship, financial and time investments, and choices chocked with quandary that can change the course of your road. But what would you do if you knew your life would melt away with an inherited neurodegenerative disease, one that disintegrated both physical and mental function without any treatment or present cure?
That’s what scholars like DNA sequencing microchip inventor Professor Chris Toumazou, economist Emily Oster and their colleagues at Brown University studied. What they found was surprising.
The genetic test
Within half an hour, Toumazou’s genalysis microchip could compare a patient’s DNA with a template for genetic anomalies like Huntington disease and see if they match up. This technology significantly accelerates genetic tests like the one first used on patients back in 1993.
Toumazou says knowing whether or not one has a genetic predisposition would personalize medicine and improve quality of life if a person and his or her doctor could instead do preventive care and proactively manage a person’s lifestyle.
“The future doctor, I believe, will be looking at your medical future, not your medical history,” Toumazou emphasizes in a CNN interview.
But what if a person simply didn’t want to know in the first place?
Oster and fellow researchers found that although 70 percent of sons and daughters of a parent with Huntington disease will carry the mutation, only 7-10 percent of those adults took the genetic test that would definitively reveal if they will themselves manifest the rare disease.
The research paper, published in “American Economic Review” surmised perhaps so few of parents with Huntington disease get the genetic test because they are, or at least they believe they’re better off not knowing.
CNN points to some individuals that literally worried themselves sick with the suspense and, after confirmation they will indeed have the disease, emotionally relaxed but paradoxically withdrew from social activity.
This, while others turned down testing and enjoyed productive, optimistic lives free from stress related to confirmed predisposition of the disease. Oster said those who opted out of genetic testing pursued more education and training than those who tested and tested positive for Huntington’s.
A CNN article on a brother and sister who each took opposite approaches to being a carrier notes that “their respective decisions allowed each of them to live the lives they wanted.”
Oster’s research detailed, “Once tested, individuals in this model can no longer manipulate their beliefs. This means that a significant ‘cost’ of testing is the loss of the option to believe” in personal health, in a positive life outcome and in life-managing care should medical advances be made for Huntington disease.
Ralph Hertwig, Ph.D., and fellow analysts recently studied deliberate ignorance in research published May 2016. They uncovered choosing not to know does carry important self-preservationist functions.
“It is a choice to seek rather than reduce uncertainty whose reasons require nuanced cognitive and economic theories and whose consequences – for the individual and for society – require analyses of both actor and environment.”
Sovereign Health understands it can be daunting to receive a diagnosis or label: “You have a mental illness,” or an eating disorder, or confirmation “you’re an addict.” That’s why we assess our patients with complete and sometimes dual diagnosis then immediately envelop them with a targeted level of care and customized treatment plan. There is no uncertainty and no death sentence here. We educate, rehabilitate and cultivate each person; it’s how we achieve A Better Way to a Better Life.
About the author
Sovereign Health Staff Writer Kristin Currin-Sheehan is a mindful spirit swimming in metaphysical pools with faith as her compass. Her cover: a 30-something Cinderella breadwinner of an all-sport blended family. Her repertoire includes writing and editing; writing poetry, lifestyle articles and TV news; radio production; and on-camera reporting. For more information and other inquiries about this media, contact the author at firstname.lastname@example.org.