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Thoughts on cure, etc

erlipman's picture

My main thoughs while reading the bioethics-related readings were about just how complicated these bioethical issues are. Usually we don't even have a unified philosophical or practical theory of what gives a life meaning or makes a life good, so how can we even approach these questions of wheter this condition or that one makes a life better in a scientific way. I think the best tool we have are individual experience, and maybe some informal standard of pleasure=good, pain=bad, but thats not much. In the end, personally, I think it makes sense to try and figure out how we can best protect individual agency, but this too is far from straightforward when we are talking about a diverse group of people (whp may or may not be born and span the spectrum of cognative ability) as well as technologies with inevitabley unforseen implications. All in all, I am glad that I am not a bioethisist, but agree that these things are important to think through and that this thinking through has to involve the people whose experiences are closest to those of the individuals that these echnologies will affect.

I was interested in the consideration in some one the readings (I believe the Nature article and Clare) of the implications of cure or screening for those currently living with the disabilities or conditions that are being subject to cure. These authors pointed out that a focus on cure concretely can divert resources that might be better used to improve the opportunities or quality of life for those currently living with the disability, and less concretely sends the message to these people that their disability makes them inferior and must be eliminated so that we can reach towards a better future. I wonder if there are ways that cure/pre-natal screening might be reconceptualized in a ways that is not so detrimental to people with the disabilities on which the cure/screening is focused.

Comments

Tracy Kolenchuk's picture

You might be interested in my paper A Theory of Cure. https://www.academia.edu/41109111/A_Theory_of_Cure_-_Paper My position on disabilities is simple. If it can be cured, it's an illness. If it cannot be cured, it's a disability (or some other attribute that cannot be cured). Of course it's not so simple in specific cases. I believe the paper provides a starting point for a theory of cure that can be used in many cases.
tracy