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@ARTICLE{Schtz:202284,
      author       = {Schütz, Holger and Heinrichs, Bert and Fuchs, M. and
                      Bauer, Andreas},
      title        = {{I}nformierte {E}inwilligung in der {D}emenzforschung.
                      {E}ine qualitative {S}tudie zum {I}nformationsverständnis
                      von {P}robanden.},
      journal      = {Ethik in der Medizin},
      volume       = {28},
      number       = {2},
      issn         = {1437-1618},
      address      = {Berlin},
      publisher    = {Springer},
      reportid     = {FZJ-2015-04555},
      pages        = {91-106},
      year         = {2016},
      abstract     = {BackgroundInformed consent is a legal as well as ethical
                      prerequisite in clinical research. For dementia research,
                      informed consent can be a problem if subjects with dementia,
                      whose capacity for understanding and thus also decision
                      making might be limited, are to be examined. This might
                      result in exclusion of dementia patients from research, as
                      capacity for understanding and decision making are often
                      equated with the ability for rational decision making.
                      However, this valuation has been criticized at times for
                      attaching too much importance to the cognitive aspect of
                      decision making.MethodsThis qualitative study investigates
                      the actual consent procedure of a clinical research study in
                      Germany with regard to dementia patients’ subjective and
                      objective understanding of informed consent information.
                      Research participants were ten dementia patients, who
                      volunteered in two clinical research studies, as well as
                      their caregivers. Data were collected by use of
                      semi-structured interviews.ResultsIt was determined that the
                      patients’ comprehension of informed consent information
                      was rather limited. However, a number of patients were quite
                      aware of this. In contrast, all caregivers claimed to have
                      fully understood the provided information, while their
                      objective comprehension was also incomplete. Several
                      participants indicated that they did not attach much
                      importance to the information given in the consent procedure
                      and that their consent did not primarily depend on this
                      information. Rather, participation in the research study for
                      them seemed to be more of a problem-focused coping strategy
                      for dealing with their diagnosis of dementia.ConclusionFor
                      research ethics these results raise the question whether the
                      currently prevailing emphasis on the cognitive aspect of
                      autonomous decision making, i.e., comprehension, may be too
                      one-sided, and to what extent the “volitional” aspect in
                      giving consent should be given greater consideration.},
      cin          = {INM-8 / INM-2},
      ddc          = {100},
      cid          = {I:(DE-Juel1)INM-8-20090406 / I:(DE-Juel1)INM-2-20090406},
      pnm          = {572 - (Dys-)function and Plasticity (POF3-572)},
      pid          = {G:(DE-HGF)POF3-572},
      typ          = {PUB:(DE-HGF)16},
      UT           = {WOS:000377439800002},
      doi          = {10.1007/s00481-015-0359-3},
      url          = {https://juser.fz-juelich.de/record/202284},
}