I am asking this question to myself in particular and to everyone in general.
Is it worth finding cures for rare genetic diseases which affect just 100s or 1000s out of the 7 billion of the worlds population?
In nature, say in a population of wild bison, such rare genetic disorders would just manifest themselves and soon the individual will die, if the disease is terminal that is. Or else it will just maintain the low gene frequency. Not altering the robustness of the gene pool in general.
But what about Humans?
Finding a cure to ANY disease involves millions if not billions of dollars. Pharmaceuticals do not invest in such diseases primarily cause they will never recover the cost of finding the cure due to the limited market. Such diseases rely on academic research for possible cures.
Looking at it from the larger gene pool point of view, is it beneficial to just let these individuals die before they procreate? Sooner or later the faulty gene will be extinct. And 100s of people is not a large number, after all that many have died in terrorists attacks in Mumbai alone. Many many more have died in natural disasters in the past year alone.
But what about diseases which are not terminal? They will be passed on in the children of the patients. Should the patient be responsible and not procreate by their own will?
And what about the patients themselves? They will ask me : What if you had this disease instead of me? Would you be writing this blog?
However less be their numbers, they do have a right to life. And if the bigger whole is being examined, then they are fighting for their survival just as so many others in nature do. Despite their illness. If they survive and procreate then they have won. Despite their illness. Who am I to decide whether a cure should be found or not?
This is a sensitive issue no doubt. And I don't have an answer to this question. I don't even know if I am aware of all the factors which affect this issue. And I am the least qualified person to declare what should and should not be done.
All I can ask of you is to give this question some thought.
