Hope you enjoyed today’s talk!
Prof. Craig Garner talked about the recent work that his lab is doing on neurobiological approaches to treating Down syndrome. The talk itself consisted largely of the science behind his work, and then we proceeded to explore some related ethical issues in the ensuing discussion.
Of course, our discussion here should focus on ethics, but I just want to make a quick side-comment. I personally appreciated how excited Prof. Garner was about the science– about neurotransmitters, inhibition/excitation, synapses, etc– because it really made things easier for me to follow him. This is often said about a lot of people, but I really thought that his enthusiasm was contagious. I found myself wanting to better understand the science behind Down syndrome. I hope you guys felt the same way!
But of course I was also thinking about the ethical issues involved here. Again, feel free to discuss any moral issue that you found relevant– but I would especially be interested in hearing your thoughts about informed consent in cases where, like here, others are making decisions for the patients. (The concept of informed consent is a quite developed one in bioethics, and you can read a very comprehensive review of the literature here. For something more fun and accessible, listen to Onora O’Neill on medical consent.)
In class, we discussed the possibility that some people with Down syndrome might have sufficient cognitive capacity to give informed consent. But what about the other cases when the patient clearly cannot grasp information to be able to consent in a meaningful way? In those cases, we usually have relatives give consent on behalf of the patients. I’m wondering what ethical complications there might be in such cases.
I think the worry becomes particularly visible when the treatment leads to some change in personality. I think many of us have the intuition that we should be in control over decisions that affect our personalities– we like to think, after all, that we have the power to change our personalities when we determine to do so. And that power is important to us.
So we have a treatment that could significantly enrich the lives of patients with Down syndrome by increasing their cognitive capacities. And yet there is the worry that, in prescribing those treatments onto the patients, we are somehow breaching the patients’ autonomies.
How worried are you about that specific challenge? In general, what sorts of problems are there in making decisions for others about medical treatments?
Again, of course, feel free to comment on other relevant ethical issues as well. Looking forward to reading your thoughts!