Return of Research Results: Would You Really Want to Know?

Pretend that you are part of a medical research study. If you are now really part of medical research study, your consideration and response to this thread should be even more significant. Pretend that you are part of a study to detect the frequency of a gene within a population that can cause a severe and fatal neurologic disease if you have that particular gene. Somehow, the researchers found that you are part of a population of people that they would like to study. And they ask you to participate. It would take only a few drops of your blood and only a few minutes of your time and you would get a participant button to wear on your coat. By being a participant in this genetic study, you would be doing an altruistic thing by contributing to the knowledge about the disease, specifically how common the genetic abnormality is present. Sounds simple enough, doesn’t it? Want to be a participant? It’s free.

By the way, you do understand that you are a participant, not really a subject since you are not needed for the study after the blood is taken and actually after a few demographic details are obtained you can leave. The results obtained from your blood will be part of pool of 4999 other participants and will be published in the genetic literature as the percentage of participants with the gene abnormality in that 5000 participant population. Still sounds simple? No muss. No fuss. No risk? Risk? Maybe.. what if you just happened to be one of the 0.5% whose blood was found to contain that gene that might cause you to develop a severe neurologic disease in the next dozen years. Would you have wanted to know the results of your own blood test as to whether you had that abnormal gene? Would you want to know whether you had a risk for a disease you really don’t know much about? Would you want to know the result of your blood test if what you do know is that the disease may occur in family members? Would you want to know the results if it was required that you report them to your medical or life insurance companies? Would you want to know if you also knew that there was no current treatment for the disease and is always fatal after a year or so of symptoms?

Would your decision to know the result be affected by knowing that it would cost time and money to the research program to locate the results of your test amongst the 5000, to be sure the results were valid, by retesting, and then by providing professional counseling for you when the results of your test are revealed?

Finally, let’s suppose nobody asked you to participate. Your blood had been already taken years ago for some medical problem or other and was held without your knowledge in a blood bank storage for later research or whatever and was pooled with hundreds of thousand others tubes of blood and now used for this genetic survey. Your blood is out there and has been tested for the gene and some technician found the result, knows the result but you are virtually anonymous and you will never know. If you never knew that your blood was tested for the gene, there would be no reason for you to want the result. Right?

These questions are not philosophic rambling but actually current practical ethical concern in these days of research into the genetic basis for many of the known disorders such as Parkinson’s Disease, Huntington’s Chorea and other neurologic and non-neurologic diseases. How much should a participant or a subject patient in a clinical trial be informed about their own test results or the final results of the clinical trial? This issue is discussed in a series of articles in the November 2008 American Journal of Bioethics. But let’s begin a discussion here about your views since it will be the public’s input that will set the ethical criteria for these research studies. ..Maurice.