Do You Want to Know Your Future?
Tikkun Magazine, July/August 2010
Do You Want to Know Your Future?
Arriving at your local Walgreens—a DNA kit that will estimate your chances of getting cancer, heart disease, Alzheimer's, and myriad other diseases or conditions: just check the ones you want to know about. Are you going to buy it? If so, will you check the box for Alzheimer's? Do you want to know your future?
The medical establishment wants to take this product off the shelf and deprive you of the choice to look into your health future, even if all the uncertainties of the risk assessments are adequately disclosed. Are they right to do so?
These new DNA products—whether offered by Walgreens, 23andMe, or Navigenics—are opening a whole new world where we can assert responsibility for our own health. Doctors are already irritated that the Internet has given us so much information about our health conditions and treatments that they don't have enough time to answer all the questions that better-informed patients are asking. We get fifteen minutes and out. Any longer, and the doctor can't make money from the reimbursement provided by Medicare, Medicaid, or private insurers for a routine health examination.
OMG, were we patients to know from genetic testing that we had a higher-than-average risk for serious disease in the coming years, we might ask how we should change our lifestyles or take preventive steps to reduce that risk. Doctors would have to be better informed about the efficacy of different lifestyle and treatment regimes. They might lose control of the doctor-patient dialogue. They would no longer be the all-knowing dispenser of information; we patients might actually be empowered to have an adult dialogue about our health.
It is our health that is the issue, after all, isn't it? And shouldn't it be our responsibility to understand what makes us healthy or sick? And isn't it better for us, and for the health of the nation, to prevent disease and disability and not just manage a disease—and perhaps the suffering—after symptoms appear?
Why are doctors so reluctant to let us have genetic information about our future health? They argue that predicting future health risk based on genetic analysis is an uncertain science, that we would not be able to understand that genes are simply a risk factor, not a determinant, of future disease. They want to protect us from the fear and anxiety of living with the knowledge that we may have a greater-than-average risk of certain diseases.
That seems a bit paternalistic.
No one is mandating genetic testing. These genetic testing products permit a patient to choose whether or not he or she wants to know the risk from certain diseases. One can choose to get a report about one's risk for heart disease, but not Alzheimer's, or about one's risk for diabetes but not cancer. Perhaps a patient may want to know about the risks of a certain disease because a parent or sibling has that disease. Or perhaps one wants that knowledge to determine whether to have a child, or to test one's fetus in utero for specific disease risks. Perhaps one wants to know the risk for diseases that have a means of prevention but not for a particular disease that has no cure, like Alzheimer's. Francis Collins, the new Director of the National Institutes for Health, undertook genetic testing and thought long and hard whether to check the Alzheimer's box. Eventually, he did. That was his choice, and that should be the choice we all are permitted to exercise. That choice should not be denied by the FDA.
New products are coming on the market all the time. And there are "early adopters" who like to try new products out. Feedback from these early adopters tells us a lot about how new products can be improved in updated versions—added functions, improved convenience, more product explanation. Early adopters of genetic testing products will let us know how we (and the medical profession) handle more knowledge of our own future, even if that knowledge is imperfect.
Recently passed health care reform relies heavily on empowering patients to use their own health information better to reduce the risk or severity of future health conditions. Genetic testing is a powerful shock treatment to make us think about how to do just that. With personalized diagnostics and treatments coming soon, we need to begin to get comfortable about knowing our own genes.
Our health is too important to be relegated to the medical profession.
Our future and the future of our families is our responsibility too.
George Vradenburg is the co-publisher of Tikkun.
Vradenburg, George. 2010. Title. Tikkun 25(4): 6