Incidental findings of therapeutic misconception in biobank-based research.
Genet Med
; 14(6): 611-5, 2012 Jun.
Article
em En
| MEDLINE
| ID: mdl-22261760
ABSTRACT
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.
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Bancos de Espécimes Biológicos
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Achados Incidentais
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Pesquisa Biomédica
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Mal-Entendido Terapêutico
Tipo de estudo:
Diagnostic_studies
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Observational_studies
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Qualitative_research
Limite:
Adult
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Female
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Humans
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Male
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Middle aged
Idioma:
En
Revista:
Genet Med
Assunto da revista:
GENETICA MEDICA
Ano de publicação:
2012
Tipo de documento:
Article
País de afiliação:
Estados Unidos