An alternative approach to deductive disclosure
Giving choices about use of info
In a typical informed consent process, the researcher assures subjects at the outset of a study that their information will be kept confidential – and the issue may never come up again.
However, in an effort to handle cases of potential deductive disclosure in qualitative research, researcher Karen Kaiser would like to see a process that expands that conversation.
Kaiser, PhD, of the Institute for Health Research and Policy at the University of Illinois at Chicago, devised what she calls an alternative approach to addressing confidentiality issues. This approach could be used with any qualitative study that is expected to reveal subjects' personal details.
Part of the approach involves an effort by the researcher to determine the potential audiences for the finished study. But it also involves a revamped informed consent, starting with the document signed by subjects at the beginning of a study.
"The consent form wouldn't need to be altered too much, other than adding a statement to let the study participant know that once the interview or the data collection is over, they would be given an opportunity to talk about concerns they had or discuss their data use in more detail," Kaiser says.
After the interview, a subject would receive a second form, which Kaiser calls a post-interview confidentiality form.
The form would give the subject different choices as to how information from the interview could be used:
- with all the information as the subject provided it, including his or her real name and other identifying information.
- with the information that the subject provided, minus the name. The subject is told that it still may be possible to identify him or her based on the data.
- with the information the subject provided, but with changes made to keep the subject from being identifiable. In this instance, the subject can specify that certain information be masked or removed.
Kaiser says that if participants are told the potential audiences for a study, they can choose to have some information held back from an audience that might know them well. For example, a person participating in a support group could agree to certain details being available in a journal article but not in a report given back to the group.
Under Kaiser's alternative approach, the IRB reviewing the study would look at both the informed consent and the post-interview form.
Kaiser says an approach of this kind would benefit researchers, who would have clear guidance from participants about what it is appropriate to reveal, particularly areas that might lead to inadvertent disclosures. She says she doesn't believe it would lead to many instances of participants withdrawing their permission to use information.
"There are published studies that show participants actually wanting more of their information shared than researchers realize," she says.
In a typical informed consent process, the researcher assures subjects at the outset of a study that their information will be kept confidential and the issue may never come up again.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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