Posted on August 22, 2012
Laura Weiss Roberts (bio) talks about the ethical grounding of informed consent.
People wonder how you can ever experiment on human beings? How could that ever possibly be ethical? And yet there's this imperative to try and understand the illnesses that people have, try to understand the basic aspects of our, of human life.
And so there's this tension between the desire to know more that would bring about benefit and then potentially this very negative sense that you're sort of using people. And I think the way you stretch out of that, a lot of people thought about this over a long time, and I think the way you stretch out of that is by very thoughtfully informing another person.
And it might be a person who is suffering because they're suffering from a particular illness, and inviting them, informing them, and then inviting them to join with you authentically to answer a question of importance in their lives or for society as a whole.
So the idea is that you're no longer using them because they are joining with you in answering this question that's meaningful to them. So then the question is how do you actually accomplish that?
If people are extraordinarily vulnerable, they cannot understand what you're saying. They have such severe suffering, physical pain, cognitive problems that they can't really appreciate or understand what you're inviting them into, then possibly you're just not going to be able to do that kind of work ethically.
But if they do get it, and if you can kind of bring them along and have them understand it and authentically join with you to answer that question, then there's the ethical grounding of your work.
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