We all laughed at our friends sense of humor, yet that discussion raised an important sense of awareness for me. Would any of us really want to know when or even how we were going to die? I believe most of us would not.
Yet, we are rapidly entering a stage in medical history whereby with genetic testing we will be told many facts concerning our genetic make-up. We will be given information that will be highly predictive of many diseases, such as cancer and heart disease, and heavily influence our health, as well as pinpoint with reasonably accuracy when as well as how we are going to die.
A disease called Huntington can serve as a good model and example of this new and evolving concept in medicine. Huntington's disease effects 25,000 Americans and is a severe neurological disease which occurs at an individual's mid-life leading to death after 10 to 15 years of uncontrollable psychological deterioration and dementia and which is transferred to their children at a 50% rate.
In other words, children of those effected know that they have a 50/50 chance of coming down with this dreadful disease at the prime of their lives.
Many of these offsprings of parents with Huntington's disease are requesting now available genetic testing to determine whether they are going to be afflicted and die an early death. Because there is no cure or treatment, individuals at potential risk undergo an incredible emotionally wrenching experience deciding whether or not to be tested. Would it be better not to know? Or would knowing the result bring an element of emotional peace?
As it turns out, there is an available answer to this question. A recent Canadian collaborative study published in the New England Journal of Medicine reported that in a group of at risk individuals for Huntington's disease, those who chose to have themselves tested regardless of the outcome, had better psychological health after being tested then those who chose not to be tested.
I believe individuals with a strong family history of other diseases such as breast, colon or ovarian cancer will also avail themselves of the genetic testing which has recently been reported to be highly predictive of whether an individual will or will not develop cancer of these organs.
Unlike Huntington's disease, cancer prevention, testing and treatment is available and may significantly reduce the chances of having these diseases or at least curing them at an early stage.
Numerous ethical issues are arising from this new aspect of predictive genetic testing. While the right to know is well established in American medicine, the right not to know is not as well thought-through by physicians or patients.
As we learn more about our genetic make-up and are able to predict more and more influencing diseases, our society should start thinking about this. It is a lot to think about.
(Frank H. Boehm, MD is a professor of OB/GYN and Director of OB at Vanderbilt Medical Center in Nashville, TN. He can be reached at his web site http://dr-boehm.com. Dr. Boehm resides in Boca).