How much would you want to know?
This question was prompted by several reports which highlighted how cheap DNA tests (or personalised sequencing) have become. It might have taken months, if not years and hundreds of thousands of dollars in the early 2000’s individual can now buy their own tests for a few thousands dollars and obtain the results within weeks.
This prompted us to ask ourselves whether we would want to take a test which would tell us which terminal diseases we might carry. (Would you like to know the likelyhood of your developing Alzeihmers?) Furthermore, how would you deal with these questions when it comes to your progeny?
The difficulty in considering these questions is that the answers usually come in percentages. “You have a 75% chance of developing this disease”. What does this mean exactly when it comes to one person? Should you treat this as a “yes” and therefore start writing your will? What if you are told you have a 25% chance? Would it be business as usual? Lastly, you know that there are false positives (diagnosed with a disease but not actually having it) which very in their recurrence depending on what is being diagnosed.
The human brain, it turns out, is not well equipped to deal with one estimate at a time (what is the likelihood that you share the same birthday with one of 25 other guests?). So when it comes to dealing with a battery of these in the medical field (false-positives etc…) the public at large lacks the ethical and mathematical tools. (Insert here a call for the medical profession and statistician to come-up with guidelines).
In the winter of 89/90 I was invited by my brother to go trekking in Nepal. I
looked at the map and thought that with extra training (I was quite fit for sea-level purposes) I would be well-prepared. It turns out that by 3 000m my brain was blanking-out. I could not l beyond a few steps. The magnificent Nepali and Tibetans were zooming by me (barefeet) as if I had been standing still.
I entertain two contradictory notions from that experience:
1) If I had known how difficult it was going to be, I would not have agreed to it
2) I am glad I did it
So far, there is no system that I know of, which might tell you when “there is nothing more frightful than ignorance in action” and when “knowledge is the wing wherewith we fly to heaven”.