Michelle L McGowan1, Allison Glinka2, Janelle Highland3, George Asaad4, Richard R Sharp5. 1. Department of Bioethics, Case Western Reserve University, Cleveland, OH, USA ; Center for Genetic Research Ethics & Law, Case Western Reserve University, Cleveland, OH, USA. 2. University of Toledo Medical Center, Toledo, OH, USA. 3. Department of Bioethics, Cleveland Clinic, Cleveland, OH, USA. 4. Ohio University College of Osteopathic Medicine, Athens, OH, USA. 5. Center for Genetic Research Ethics & Law, Case Western Reserve University, Cleveland, OH, USA ; Department of Bioethics, Cleveland Clinic, Cleveland, OH, USA ; Genomic Medicine Institute, Clevel and Clinic, Cleveland, OH, USA.
Abstract
AIMS: Advances in next-generation sequencing technologies make it possible to envisage multiple contexts in which genomic tools might be used to enhance patient care. We describe how genetics patients and their caregivers view the promises and perils of clinical genomic testing. PATIENTS & METHODS: Fifty-one interviews with patients and parents of pediatric patients seeking genetic evaluation at an academic medical center. RESULTS: Themes from interviews include participants' enthusiasm for clinical genomic testing for diagnostic purposes, medical benefits and concerns about emotional and psychosocial burdens resulting from clinical genomic testing. CONCLUSION: By clarifying these patients' and caregivers' views of clinical genomic testing, the findings we report can help to anticipate other patients' reactions to new forms of personalized medicine enabled by genomic technologies.
AIMS: Advances in next-generation sequencing technologies make it possible to envisage multiple contexts in which genomic tools might be used to enhance patient care. We describe how genetics patients and their caregivers view the promises and perils of clinical genomic testing. PATIENTS & METHODS: Fifty-one interviews with patients and parents of pediatric patients seeking genetic evaluation at an academic medical center. RESULTS: Themes from interviews include participants' enthusiasm for clinical genomic testing for diagnostic purposes, medical benefits and concerns about emotional and psychosocial burdens resulting from clinical genomic testing. CONCLUSION: By clarifying these patients' and caregivers' views of clinical genomic testing, the findings we report can help to anticipate other patients' reactions to new forms of personalized medicine enabled by genomic technologies.
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