A culture shock in brain ethics

Dana has an eye-opening article on the challenges of doing brain research in cultures that don’t share the same assumptions about science and human nature.

There are several sections of the article which turn our research assumptions on their head, owing to the fact that some common principles of ethical research turn out to be based on quite a narrow view of human values.

The idea that donating tissue is simply a matter of individual choice is not a belief held by many communities who believe that all people are interconnected – making individual donations a group decision.

The article touches on an example from the Havasupai people and a similar situation was discussed in an All in the Mind interview with a Maori neuroscientist.

However, I was particularly struck by this part on confidentiality which is often assumed to be the bedrock of human research.

Confidentiality poses another ethical challenge to researchers working with indigenous peoples. Participants in academic studies are invariably anonymous, but in many Native cultures, not identifying oneself, one’s family, and one’s homeland is unacceptable. Anonymity, they believe, undermines the cultural fabric of the community, and is akin to stripping its members of their traditions and beliefs.

 

Link to ‘Cross-Cultural Neuroethics: Look Both Ways’.

2 Comments

  1. Posted January 21, 2011 at 10:24 am | Permalink

    That’s an interesting point about anonymity. The phenomenon of feeling “stripped of one’s identity” may even occur in our own culture. There was a study recently in the university where I got my PhD (NOT apocryphal – I know the names of the researchers involved) – which interviewed cancer sufferers. It was a really in-depth, emotive kind of study and the participants ended up really wanting their names associated with the study – they felt like it was a way of telling their stories. The researchers were fine with that, but when they approached the ethics committee about it (I guess they were doing things by the book, which may well have been a mistake) they were categorically forbidden from naming the participants. Crazy!

    … I can see how someone from a Foucaultian perspective would see the fetishisation of anonymity as a classic case of power/knowledge: if you don’t name someone, it absolves you from letting them have any say in how you present what they are saying. It’s a really problematic area, actually, and I am struggling with it at the moment as I review my own fieldnotes before sending them to the teachers in whose classrooms I studied.
    ——
    mindandculture.wordpress.com

  2. Posted January 24, 2011 at 6:58 pm | Permalink

    I’m currently working on a paper involving repeated interaction games (one classic example of which is the ultimatum game–http://en.wikipedia.org/wiki/Ultimatum_game) This game is one of reputation and its been anecdotally reported to me a few times that there are many communities who refuse to participate in such a game–their reputations are far too important to be considered a game.


2 Trackbacks/Pingbacks

  1. [...] those values around ethical research you have are universal? Think again. The folks at Mind Hacks point to an interesting article from the Dana Foundation about how different cultures share [...]

  2. [...] DNA samples of the Havasupai Indians by geneticists at Arizona State University in 1990. Over at Mindhacks, I’ve also discovered an interview on a related topic with a Maori [...]

Post a Comment

Required fields are marked *
*
*

Follow

Get every new post delivered to your Inbox.

Join 23,573 other followers