Consuelo H. Wilkins|Brandy Mapes|Rebecca N Jerome|Victòria Villalta-Gil|Jill M. Pulley|Paul A. Harris
Understanding What Information Is Valued By Research Participants, And Why
Meharry Medical College|Vanderbilt University Medical Center|Vanderbilt University Medical Center|Vanderbilt University Medical Center|Vanderbilt University Medical Center|Vanderbilt University Medical Center
growing public demand research participants receive results regardless whether clinical action indicated instead standard practice returning actionable results propose reconceptualization called return value encompass varied ways research participants value specific results general information receive beyond actionable results proposal supported national survey diverse sample found receiving research results would valuable 785 percent would make likely trust researchers 703 percent respondents highly valued results revealing genetic effects medication response predicting disease risk well information nearby clinical trials updates data used information valued varied education raceethnicity age policies needed enable return information ways recognize participants differing informational needs values