Posted on August 22, 2012
Laura Weiss Roberts (bio) discusses safeguards for ethical research.
You have to have a really good question that has to be deeply relevant to the person who is going to join with you to answer it. It has to truly be intended to benefit, not necessarily them, but people who walk in their shoes, other people who live through that experience.
You have to minimize the amount of risk that they're undertaking, so if you can answer the question in a much less risky way, then it really is imperative to do it in that way.
So safeguarding people, recruiting them thoughtfully, choosing the right group to invite into the work. Informing them accurately, doing everything you can to have it be a real and meaningful response back. The decision to join with you should be well informed. It should not be pressured. They should feel like they've got the choice as to whether they should work with you or not on that.
And so building those safeguards is really important. Then as they progress, say, through a protocol, making sure that they continue to be informed. If they really want to step away from the protocol, helping them do that gracefully without ill consequence so that they don't feel coerced and kind of railroaded into it.
And then everything you can do as the progress through the protocol and at the end of the protocol to support their authenticate participation, to have them derive as much benefit as possible from being in the protocol. Those are all things that you can do to make sure that it's ethically grounded.
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