Re: Ethics of user testing and people with cognitive disabilities

Hi all

I’m a long time lurker on this list, and I’m sure there is already a fair amount of experience on this topic amongst group members. But I would like to speak up to second Josh’s comments here on being sensitive when considering user research with people with cognitive disabilities.

This emphasises the importance of ethics of user research, including key principles of:
* informed consent—is the participant aware of what they’ll be asked to do, and what will happen to the data that’s collected? Are they able to independently give consent to participate? This might be an issue for some people with significant cognitive disabilities, including dementia.
* beneficence [1]—is the research study designed to minimise potential harm to the participant? As Josh indicates, a study might be designed to gather lots of interesting data that contribute to standards development by observing participants  having difficulty with a particular interaction. But if the result is that some participants are severely traumatised by their experience, or lose confidence in their ability to use a piece of technology, is that an acceptable tradeoff? 

When a user group is particularly vulnerable, ethical considerations become even more important, including research study design and sensitively conducting the study (including knowing when to stop). There may in some cases be legal considerations to deal with.

Several organisations have published guidance in this area; the British Psychological Society’s Code of Human Research Ethics is one good place to read more on this topic [2]

I think it’s essential to have a formal, planned approach to any user research intended to learn more in this area. In particular, and apologies for stating the obvious, it’s essential to have some research questions established up front before starting out. 

If there are specific research questions this group wants answered, I think that partnering with academic research groups that have the infrastructure, ethical research frameworks and connections with relevant participant groups would be one good way to proceed.

Dave

[1] https://en.wikipedia.org/wiki/Beneficence_(ethics)
[2] http://www.bps.org.uk/sites/default/files/documents/code_of_human_research_ethics.pdf

> On 11 Jul 2016, at 11:15, josh@interaccess.ie wrote:
> 
> [Chair hat off]
>  
> In a previous thread the issue of user testing with people with cognitive impairments has been brought up. I thought this could be a good time to 
> share some of my own thoughts in this area. As some of you may know, I ran a user testing lab in the National Council for the Blind of Ireland for around 10 years. During that time I ran user tests with a wide range of users, not just those who are blind/VIP. In that time I did a small amount of testing with people with cognitive impairments, mental health issues etc. I found this a difficult group to test with due to my own concern about the ethics of doing so properly.
>  
> One very strong reservation I have about this whole area is simple. Does the user have the ability the objectively separate the tasks they are  asked to perform in a test (and the natural success/failure when trying to completing these tasks) from their overall 'sense of self'? What I mean is that will the user be able to realise that their actions are being objectively observed without any 'judgement' on their performance?
>  
>  I would hate to think that a user would come away from a user test, where many tasks were failed (which is great usability information) but feeling worse about themselves, or as if _they_ were some kind of failure. In short, I think user testing is a bit of a performance, within an utterly contrived environment. Some people take to this well, others don't.
>  
> This is a very thorny issue but one I want to flag. I don't think testing should take place at all without a strong framework about how to deal with these sensitive situations. Sometimes you may have to make a call not to test, if it isn't in the best interest of the user test participant, even if they may be a perfect candidate for 'rich data'. I've made this call not to test in the past, and my overall take away was that I am largely uncomfortable doing this kind of testing, unless I'm sure it is in the participants best interest, separately from whatever the secondary need of a project/client is.
>  
> Thoughts?
>  
> Josh

David Sloan

UX Research Lead
The Paciello Group
dsloan@paciellogroup.com

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Received on Monday, 11 July 2016 10:53:43 UTC