AUG 22, 2013 09:00 AM PDT

Return of Genome Sequencing Results to Physicians and Patients

C.E. CREDITS: CE

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Speakers
  • Director of Social Sciences & Bioethics, Assistant Professor, Scripps Translational Science Institute, Scripps Health & The Scripps Research Institute
    Biography
      Dr. Bloss is an Assistant Professor, as well as Director of Social Sciences and Bioethics at the Scripps Translational Science Institute. Her research is funded by the National Institutes of Health and is focused on investigating individuals' behavioral and psychological responses to disclosure of personal genomic information. She is the lead researcher on STSI's Scripps Genomic Health Initiative, and her work on this project was recently published in the New England Journal of Medicine and has been highlighted at a number of national and international scientific meetings. She has also presented invited testimony on consumer genomics before the Food and Drug Administration Advisory Panel.
       
      Dr. Bloss' other research interests include developing ways of combining genomics with traditional disease risk factors to make predictions about disease development, progression and response to treatment, as well as designing effective health interventions that leverage genomic information. She also conducts genetic association studies and has several collaborations to investigate the genetic underpinnings of neurological, behavioral, and other health-related phenotypes.
       
      Dr. Bloss received her B.A. in Psychology from Smith College, her Ph.D. in Clinical Psychology from the University of California, San Diego, and completed a predoctoral internship in clinical neuropsychology at the University of Florida. Dr. Bloss completed a post-doctoral fellowship in statistical genetics and genomic medicine at The Scripps Research Institute.

    Abstract:
    There has been considerable debate in the scientific and clinical communities regarding the return of results from genome sequencing to physicians and patients. Questions surrounding which health care professional(s) should deliver this information, as well as what types of results should be returned loom large. The aim of the Scripps Idiopathic Diseases of huMan (IDIOM) study is to use genome sequencing to inform diagnosis and treatment of idiopathic diseases. As part of this study, we assess patient and provider preferences surrounding the types of results returned from sequencing, as well as perceptions of the return-of-results communication itself. This is done via semi-structured interviews and standardized questionnaires. Data collected to date suggest that the majority of probands and their parents would prefer, if given the choice, to receive sequencing results for the presenting condition, as well as secondary findings in multiple disease categories (e.g., actionable and non-actionable, childhood and adult-onset). Further, data from the completed return-of-results sessions suggest notable variation in patient satisfaction with communication of results by the referring physician. This includes, in some cases, a marked discrepancy between the extent to which the physician felt results were communicated effectively versus the extent to which the patient perceived the communication to be effective. These case-by-case findings will be discussed in detail. Through the Scripps IDIOM study we have begun collection of empirical data on patient preferences and perceptions regarding return of results from genome sequencing for diagnosis and treatment of idiopathic disease. It is our hope that these data will help inform the development of an effective, sustainable, and cost-effective model of return of individual results from genome sequencing in clinical settings.There has been considerable debate in the scientific and clinical communities regarding the return of results from genome sequencing to physicians and patients. Questions surrounding which health care professional(s) should deliver this information, as well as what types of results should be returned loom large. The aim of the Scripps Idiopathic Diseases of huMan (IDIOM) study is to use genome sequencing to inform diagnosis and treatment of idiopathic diseases. As part of this study, we assess patient and provider preferences surrounding the types of results returned from sequencing, as well as perceptions of the return-of-results communication itself. This is done via semi-structured interviews and standardized questionnaires. Data collected to date suggest that the majority of probands and their parents would prefer, if given the choice, to receive sequencing results for the presenting condition, as well as secondary findings in multiple disease categories (e.g., actionable and non-actionable, childhood and adult-onset). Further, data from the completed return-of-results sessions suggest notable variation in patient satisfaction with communication of results by the referring physician. This includes, in some cases, a marked discrepancy between the extent to which the physician felt results were communicated effectively versus the extent to which the patient perceived the communication to be effective. These case-by-case findings will be discussed in detail. Through the Scripps IDIOM study we have begun collection of empirical data on patient preferences and perceptions regarding return of results from genome sequencing for diagnosis and treatment of idiopathic disease. It is our hope that these data will help inform the development of an effective, sustainable, and cost-effective model of return of individual results from genome sequencing in clinical settings.

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