HPSC1000 Lecture Notes - Lecture 3: Ornithine Transcarbamylase Deficiency, Jesse Gelsinger, Ornithine
24 May 2018
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Lecture 4
o Jesse Gelsinger was a teenager who died during after he volunteered to be a subject in a
trial of an experimental drug designed to help babies with ornithine transcarbamylase
deficiency (missing enzyme)
Why not experiment on the babies, who were going to die anyway?
- Argument that parents could not consent because the pressure on them was too severe
(consensus view)
Autonomy
- Greek auto = self, nomos = law
- The capacity to be self-governing, to make rules for oneself
- Free agency, without coercion or manipulation
- To live a self-directed life, to construct a life according to your own desires and plans
(without coercion)
- Closely connected to the idea of freedom
- Traces back to the Western enlightenment
- Central to contemporary bioethical debates
- Emphasis on the individual as in the best position to make choices about their lives
- Considered by many theorists to be a fundamental right
Are you autooous if you hae…?
- Been brought up to occupy a certain social role that you do not question?
- Been offered a deal when the incentives are very hard to resist? (i.e. Gelsinger case)
Kant
- For Kant, autonomy did not equal freedom to pursue our own desires, but to follow
objective and universal rules of conduct certified by reason
Versus heteronomy (laws imposed externally e.g. commanded by the will of god,
or acting on desired not legislated by reason)
- Autonomy underpins the categorical imperative
Always act in such a way that you can also will that the maxim of your action
should become a universal law
find more resources at oneclass.com
find more resources at oneclass.com
Document Summary
Lecture 4: jesse gelsinger was a teenager who died during after he volunteered to be a subject in a trial of an experimental drug designed to help babies with ornithine transcarbamylase deficiency (missing enzyme) Argument that parents could not consent because the pressure on them was too severe (consensus view) Greek auto = self, nomos = law. The capacity to be self-governing, to make rules for oneself. To live a self-directed life, to construct a life according to your own desires and plans (without coercion) Closely connected to the idea of freedom. Emphasis on the individual as in the best position to make choices about their lives. Considered by many theorists to be a fundamental right. Been offered a deal when the incentives are very hard to resist? (i. e. gelsinger case) For kant, autonomy did not equal freedom to pursue our own desires, but to follow objective and universal rules of conduct certified by reason.
