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Qualitative research with vulnerable persons: How to ensure that burdens and benefits are proportional and fairly distributed
Gieselmann, A.
S. Efkemann
M. Scholten
2019. Qualitative research with vulnerable persons: How to ensure that burdens and benefits are proportional and fairly distributed.
Journal of Empirical Research on Human Research Ethics. https://doi.org/10.1177/1556264619847322b
This case commentary investigates whether the risks and benefits of an interview study with persons under involuntary commitment on open-door policies in psychiatry were proportional and fairly distributed. Given that there is little data available on the views of service users on open-door policies, the study had significant social value. Because the individual benefits are limited in studies like this, we recommend that special measures be taken to forestall what has been called the “therapeutic misconception.” The study imposed burdens on individual research participants, as evidenced by the distress that a woman with bipolar disorder experienced during the interview. Risks and burdens must be actively monitored in qualitative studies with persons under involuntary commitment. If the actual burdens are disproportional, interviews must be interrupted and risks must be reassessed. A common principle for the fair distribution of the risks and burdens of research participation says that a research study may be carried out with vulnerable persons only if the research aims cannot be attained by including only persons who are not vulnerable. In the study under discussion, both persons who were still involuntarily committed and persons who were no longer committed were included. This indicates that either the aforementioned principle is not fully satisfied or the validity of the study is somewhat compromised. Judging that the latter option is more likely, we contend that this compromise is ethically defensible.