I do hereby renounce all my rights...
After you've got over the hurdle of enticing people to come and participate in your study in the first place, you then have to wangle their permission to (a) keep and (b) use the data that they've provided you with.
You'd think that the mere fact that they've volunteered to take part would be enough - but that doesn't take into consideration the myriad ways that researchers and their departments might possibly want to use the data into the future. There's an urban myth about a child who was taped as a toddler learning to speak, only to grow up and take a language development course at university in later life, and experience the horror of discovering that that recording of herself was being used in that course as a teaching resource. Whoops. A less than ideal situation in many ways, not least given the fact that the recording must have been at least 15 years old by that stage. Anyway, what should have happened was that that child's parents should have been asked to give their consent to the recording not just being used for the immediate project, but also kept for an indefinite period and made available as a teaching resource.
Well, there was a discussion which clogged up our department's email list for nearly two days with a to-and-fro about drawing up a generic consent form so that everyone who's recorded by anyone in the department will be able to say whether they're happy for the recording to be archived, and select options for the future use of the recording.
But there are competing interests at stake, as different projects have different priorities for how they use their data. Obviously (as far as I'm aware) the default is to anonymise the data, ie you refer to speakers by code numbers or random capital letters, so that none of your participants can be readily identified when you write up the project: an assurance of confidentiality has to be ironclad. But in my case, some of the data I've been collecting has come from people who've had to disclose a disability, and in that case it's completely understandable if people only want you to use their data for a particular specified purpose. But other people in the department work with speakers of endangered languages, say in Australia or the Sahara, and have a real interest in preserving the data in an archive that's as widely accessible as possible. For them, it would be pretty unhelpful if, say, one of the eight remaining speakers of an aboriginal language requested for the tapes to be wiped after two years.
So there are lots of issues around how you phrase the consent form - unrestricted availability is obviously much more convenient for the research community, but participants are few and far between as it is, and the last thing you want to do is make it sound like people are being awkward for wanting to limit the use of their personal data. The debate continues.
You'd think that the mere fact that they've volunteered to take part would be enough - but that doesn't take into consideration the myriad ways that researchers and their departments might possibly want to use the data into the future. There's an urban myth about a child who was taped as a toddler learning to speak, only to grow up and take a language development course at university in later life, and experience the horror of discovering that that recording of herself was being used in that course as a teaching resource. Whoops. A less than ideal situation in many ways, not least given the fact that the recording must have been at least 15 years old by that stage. Anyway, what should have happened was that that child's parents should have been asked to give their consent to the recording not just being used for the immediate project, but also kept for an indefinite period and made available as a teaching resource.
Well, there was a discussion which clogged up our department's email list for nearly two days with a to-and-fro about drawing up a generic consent form so that everyone who's recorded by anyone in the department will be able to say whether they're happy for the recording to be archived, and select options for the future use of the recording.
But there are competing interests at stake, as different projects have different priorities for how they use their data. Obviously (as far as I'm aware) the default is to anonymise the data, ie you refer to speakers by code numbers or random capital letters, so that none of your participants can be readily identified when you write up the project: an assurance of confidentiality has to be ironclad. But in my case, some of the data I've been collecting has come from people who've had to disclose a disability, and in that case it's completely understandable if people only want you to use their data for a particular specified purpose. But other people in the department work with speakers of endangered languages, say in Australia or the Sahara, and have a real interest in preserving the data in an archive that's as widely accessible as possible. For them, it would be pretty unhelpful if, say, one of the eight remaining speakers of an aboriginal language requested for the tapes to be wiped after two years.
So there are lots of issues around how you phrase the consent form - unrestricted availability is obviously much more convenient for the research community, but participants are few and far between as it is, and the last thing you want to do is make it sound like people are being awkward for wanting to limit the use of their personal data. The debate continues.
posted by cath at
10:02 pm
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