PURPOSE: This article explores expressions of therapeutic misconception (TM) in a deliberative-engagement project focused on the return of aggregate and individual genetic results from biobank-based research. METHODS: We enrolled 45 self-described African Americans in a deliberative-engagement project to explore their attitudes regarding the return of results from biobank-based research. Four groups of individuals participated in four sessions over 2 days that included both educational and focus-group components. RESULTS: TM was expressed by individuals from both clinics on each day that they met. Three main typological categories of TM were noted: (i) the reasons for consenting to participate in a biobank, (ii) the conflation of research with clinical care, and (iii) mistrust about the meaning of biomedical research findings. CONCLUSION: Although trust may explain why some research participants express TM, it was also fueled by mistrust (e.g., a disbelief that a condition described as untreatable was truly untreatable). We also found that TM is not due solely to research participants' misunderstandings but is a bidirectional phenomenon that can be exacerbated by researchers. This finding raises questions about how to engage prospective research participants in the long-term goals of biobank-based research without unintentionally overstating possible short-term clinical benefits.
PURPOSE: This article explores expressions of therapeutic misconception (TM) in a deliberative-engagement project focused on the return of aggregate and individual genetic results from biobank-based research. METHODS: We enrolled 45 self-described African Americans in a deliberative-engagement project to explore their attitudes regarding the return of results from biobank-based research. Four groups of individuals participated in four sessions over 2 days that included both educational and focus-group components. RESULTS: TM was expressed by individuals from both clinics on each day that they met. Three main typological categories of TM were noted: (i) the reasons for consenting to participate in a biobank, (ii) the conflation of research with clinical care, and (iii) mistrust about the meaning of biomedical research findings. CONCLUSION: Although trust may explain why some research participants express TM, it was also fueled by mistrust (e.g., a disbelief that a condition described as untreatable was truly untreatable). We also found that TM is not due solely to research participants' misunderstandings but is a bidirectional phenomenon that can be exacerbated by researchers. This finding raises questions about how to engage prospective research participants in the long-term goals of biobank-based research without unintentionally overstating possible short-term clinical benefits.
Authors: Tineke M Meulenkamp; Sjef K Gevers; Jasper A Bovenberg; Gerard H Koppelman; Astrid van Hylckama Vlieg; Ellen M A Smets Journal: Am J Med Genet A Date: 2010-10 Impact factor: 2.802
Authors: Altovise T Ewing; Nnenna Kalu; Gloria Cain; Lori H Erby; Luisel J Ricks-Santi; Eva Tetteyfio-Kidd Telemaque; Denise M Scott Journal: J Community Genet Date: 2019-03-14
Authors: Gabriel Q Shaibi; Iftikhar J Kullo; Davinder P Singh; Richard R Sharp; Eleanna De Filippis; Idali Cuellar; Valentina Hernandez; Sharon Levey; Carmen Radecki Breitkopf; Janet E Olson; James R Cerhan; Lawrence J Mandarino; Stephen N Thibodeau; Noralane M Lindor Journal: Public Health Genomics Date: 2018-12-06 Impact factor: 2.000