Let’s say a scientist performed a test on you and found out that you were at risk of dying of a disease that you didn’t know about, or of passing the problem on to your children.
Would you want to know? Should you be told?
The answers aren’t as easy as you might think. And in some cases, it actually might be illegal to tell you.
A new article in the journal Nature discusses this dilemma regarding research involving new genetic tests.
Research scientists everywhere are busy studying donated DNA samples to find clues about what puts people at risk of getting all kinds of diseases.
In the course of that study, they may find some surprises: A gene associated with too much cholesterol in the blood might also be a marker for heart disease, Alzheimer’s disease or depression. Another gene might predict something even worse.
So why not share the news? The ethical problem is that this work is all research. It is not definitive. Research scientists often have little clinical contact
The tests they are performing are not yet approved by the Food and Drug Administration for accuracy or reliability. They’re suggestive, not proven.
Still, when a researcher believes that there is an association between your genes and a serious disease, shouldn’t he or she speak up?
As tempting as it is to say ‘yes’, I think the answer is ‘no’. Research is just that. Until it is confirmed, it’s very likely that more harm than good will be done by trying to warn people about suspicions and best guesses.
If a scientist is absolutely sure that serious harm is coming your way AND there is something you could do to prevent it, then they must speak up.
But, until all the evidence is in and the genetic test is proven to be accurate and reliable for a large number of people, the duty not to panic and frighten should override the desire to warn. You can only cry wolf so often before people will stop listening to genetic warnings.