A large part of my book “We need to talk about this” was an effort in logical reasoning to find a practically applicable guideline, something that would hold up within a legal framework and provide clarity, a way forward instead of remaining gridlocked.
One or two people have said that they do not agree with my views. As none of them were specific, I can only guess what they meant. Were they in favour of encouraging discrimination of those who aren’t mainstream? Were they in favour of locking up people in institutions because they are autistic and putting people in chains attached to walls because of “mental” illness? Surely not.
I suspect that what they want is to see new technologies being used to rid the world of diseases and conditions closest to their heart. I do not believe that that would be just. Cancer runs rampant in my family, for example, but focusing all attention on the prevention of the development of cancer is wrong when cancer is mostly developed later in life and can be tied to the way we live. (By contrast, sickle cell anaemia does not occur in my family and I am not familiar with what it entails whereas I have seen the pain and suffering related to advanced cancer from up close.)
I have no personal ties to childhood cancer, but it seems to me that preventing the development of childhood cancers should take priority over preventing the development of cancers that occur later in life. (But note that I am not saying at all that no attention should ever go to the prevention of cancers that occur later in life!)
In my book, I came up with a guideline according to which more attention should first go to the prevention (or treatment) of conditions that lead to lives considered not worth living. Because it is just and fair, also in view of the fact that it is a generally accepted view that allowing people to have been born in itself does not constitute harm.
Once we have those figured out, we could move on to progressively less serious illnesses and conditions if people with those conditions perceive them as so problematic that they would like to see them prevented. Progressive multiple sclerosis is an example that comes to mind.
This is the opposite of the approach currently generally taken in medicine, in which those with the worst lives and most serious conditions get the lowest priorities. That is like ignoring the ship that is still miles away from the shore (sinking or not) but focusing all your attention on the ships that are closer and sure to make it to the harbour or that are already in the harbour.
Both approaches contain their own logic. Both approaches make sense. I don’t think that one is wrong and the other is right.
But if I put it in terms of another metaphor, then I have no choice but to say that it is wrong to provide water and nutrition only to roses and withhold them from geraniums.
Then the question becomes: Who am I to say that geraniums or sunflowers aren’t worthy of life or that the people on the ship farthest away from the shore aren’t worth saving? In a world full of roses and only roses, roses will soon become boring and plain.
I believe that it is a mistake to put the onus exclusively on medicine when so much more can also still be done by society to make people’s lives better and enable everyone to flourish, roses, begonias, sunflowers, tulips, orchids, daffodils and geraniums alike.