August 18, 2010

Musings on Research Ethics

Posted in Uncategorized tagged , , at 9:04 pm by mariawolters

The other day, Petra Boynton pointed to an interesting case study for training health professionals. The case study was designed to highlight issues around responsible use of mobile phone technology. (Head here for the full description). Briefly, Darrell, a physiotherapist, has taken photos on his mobile of one of his young clients, who has been making great progress. He shows the pics to his colleagues over lunch. Ethical? Professional?

Very clearly no – all data is confidental. This was immediately clear to me, but after a while, I realised it might not be all that clear to other researchers, in particular students doing their first experiments. What is confidentiality, anyway? So I thought of a fictitious (!) example that is drawn from my own research fields, speech science and human-computer interaction.

Sandy is an older person who has volunteered to try out a new voice interface. Sandy has consented to having her interaction with the voice interface recorded and transcribed. He has also allowed the research team to store her assessment of the voice interface. Finally, he has given permission to the researchers to share these recordings with others for the purpose of research. He has done so on the understanding that his data will be anonymised. When the time comes to interact with the interface, Sandy finds it very difficult and downright discouraging. He gets very anxious about his performance – even though it is not Sandy who is tested, but the interface. Some of his problems are due to his speech. He’s an older guy with a raspy voice, marked by fags and whisky, and speaks with a strong accent, being working class and Aberdeen born and bred. Which of the following are ethical:

  1. A member of the research team plays a short bit of the recording where Sandy is particularly confused at a conference to illustrate a common problem with the interface. She only identifies Sandy as a male older research participant.
  2. A member of the research team plays a short bit of the recording where Sandy is particularly confused at a conference to illustrate a common problem with the interface. She identifies Sandy as Sandy Smith from Aberdeen.
  3. A member of the research team copies a short bit of the recording where Sandy is particularly confused onto her phone and plays it to her mates in the pub.
  4. A member of the research team asks Sandy whether she can take a photo of him with the setup. She then uses this photo to illustrate the experiment at conferences and in scientific papers.
  5. A member of the research team, Kim, chats to another researcher over lunch. They swap stories about their current experiment, and Kim talks at length about Sandy and his problems with the software to illustrate some of the issues they’ve found. Kim also plays a little sample that she’s got on her netbook to illustrate Sandy’s dysphonia. Kim tells the other researcher Sandy’s name and mentions that he’s from Aberdeen.
  6. A member of the research team, Kim, chats to another researcher over lunch. They swap stories about their current experiment, and Kim talks at length about Sandy and his problems with the software to illustrate some of the issues they’ve found. Kim also plays a little sample that she’s got on her netbook to illustrate the degree of dysphonia. Kim does not name the participant nor does he mention where he is from.
  7. In a team meeting, the Chinese research student who works on speech input processing presents a list of all participants for whom the speech recognition scores were particularly bad. One of the other researchers, Kim, recognises Sandy’s ID. Kim explains that this is a person with a particularly strong accent, talks a little about Doric, the dialect of Scots which clearly colours this participant’s speech, and explains the symptoms and prevalence of dysphonia. Kim also tells the student that Sandy needed far more encouragement and support than other participants, because the system’s failure to understand him disconcerted Sandy so much. As a consequence, Sandy tried to enunciate particularly clearly, setting in motion a well-known vicious circle of misunderstandings. Kim illustrates all her points with samples from the indexed and transcribed recording.

Got your answers? Here are mine – feel free to disagree (or agree!) in the comments.

  1. Ethical – this use of Sandy’s data is covered by the consent form, and Sandy is not named.
  2. Unethical. Sandy is identified by name. This makes him traceable. If particular aspects of Sandy’s profile are of interest, they can be highlighted in a way that preserves anonymity. For example, Sandy could be characterised as an older male with a strong local accent.
  3. Unethical. Sandy’s data can only be shared for research purposes.
  4. Unethical. This type of data (photo) is not covered by the consent form, and no additional written consent was obtained. Often, it is the researchers themselves who pose for a picture of an experimental setup, so that there is no need to use participants.
  5. Unethical. Sandy is identified by name.
  6. Ethical, although opinions might be divided. Bouncing ideas off colleagues during lunch or coffee breaks is an important part of the research process, as long as anonymity and confidentiality are preserved.
  7. Ethical. This conversation is within the research team, and an important part of the research student’s training.

P.S.: Petra’s example hit quite close to home. I spent several years in physiotherapy (first single, then group therapy) for what I think might have been gross motor dyspraxia. Children with dyspraxia are an extremely easy target for bullies and ridicule, and therefore very vulnerable. If the physiotherapist is one of the few people who praises and supports them, they will be eager to please, and parents are unlikely to antagonise the person who has done so much for their poor wee darling.

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