Barbara B Biesecker
Affiliation: National Institutes of Health
- The impact of genetic testing for Crohn's disease, risk magnitude and graphical format on motivation to stop smoking: an experimental analogue studyA J Wright
Health Psychology, Department of Psychology, King s College London, London, UK
Clin Genet 73:306-14. 2008..Using genetic tests to estimate risks of common complex conditions may not motivate behaviour change beyond the impact of the numerical risk estimates derived from such tests...
- Development and validation of the Psychological Adaptation Scale (PAS): use in six studies of adaptation to a health condition or riskBarbara B Biesecker
Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, USA Health, Behavior and Society, Johns Hopkins Bloomberg, School of Public Health, Baltimore, USA Electronic address
Patient Educ Couns 93:248-54. 2013..We introduce The Psychological Adaptation Scale (PAS) for assessing adaptation to a chronic condition or risk and present validity data from six studies of genetic conditions...
- Enhancing informed choice to undergo health screening: a systematic reviewBarbara Bowles Biesecker
Social and Behavioral Research Branch, National Human Genome Research Institute NIH, Bethesda, MD, USA
Am J Health Behav 37:351-9. 2013..To assess the effectiveness of health screening interventions aimed at enhancing informed choice...
- Genomic sequencing for psychiatric disorders: promise and challengeBarbara Bowles Biesecker
Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, MD 20892, USA
Int J Neuropsychopharmacol 16:1667-72. 2013..Research into participant/patient perceptions, preferences and outcomes will identify areas of caution and prepare psychiatrists for eventual integration into clinical care. ..
- Adaptation to living with a genetic condition or risk: a mini-reviewB B Biesecker
Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD 20892 2073, USA
Clin Genet 74:401-7. 2008..Further research should result in evidence-based interventions to facilitate client adaptation that can be used effectively by genetic providers within the confines of their clinical work...
- Exploration of transitional life events in individuals with Friedreich ataxia: implications for genetic counselingV Brook White
Clinical Genetics, Carolinas Medical Center, Charlotte, NC 28232 2861, USA
Behav Brain Funct 6:65. 2010..This study captures transitional life events brought about or altered by Friedreich ataxia, a progressive chronic illness leading to disability, and the impact of these events on an affected individual's life course...
- Intentions to receive individual results from whole-genome sequencing among participants in the ClinSeq studyFlavia M Facio
Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA
Eur J Hum Genet 21:261-5. 2013..It behooves investigators to facilitate participants' desire to learn a range of information from genomic sequencing while promoting realistic expectations for its clinical and personal utility...
- Preferences for results delivery from exome sequencing/genome sequencingMartha F Wright
Genetic Disease and Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA
Genet Med 16:442-7. 2014..Conclusion:There was relative enthusiasm about the value of learning sequencing information, yet it was tempered by concern about negative feeling responses and aversion to learning about incurable conditions.Genet Med 16 6, 442-447. ..
- Teaching genomic counseling: preparing the genetic counseling workforce for the genomic eraGillian W Hooker
Social and Behavioral Research Branch, Genetic Counseling Training Program, The Johns Hopkins School of Public Health, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA
J Genet Couns 23:445-51. 2014..In this commentary, we explore reasons why genomic sequencing warrants particular consideration and put forward strategies for training program curricula and continuing education programs to meet this need. ..
- Genetic literacy and patient perceptions of IBD testing utility and disease control: a randomized vignette study of genetic testingGillian W Hooker
Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD Department of Health, Behavior and Society and the Center for Genomic Literacy and Communication, The Johns Hopkins Bloomberg School of Public Health, Baltimore, MD and Harvey M and Lyn P Meyerhoff Inflammatory Bowel Disease Center, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD
Inflamm Bowel Dis 20:901-8. 2014....
- Motivators for participation in a whole-genome sequencing study: implications for translational genomics researchFlavia M Facio
National Human Genome Research Institute, National Institutes of Health, 10 Center Drive, Bethesda, MD 20892, USA
Eur J Hum Genet 19:1213-7. 2011....
- Expectations and experiences of investigators and parents involved in a clinical trial for Duchenne/Becker muscular dystrophyHolly L Peay
aSocial and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, MD, USA
Clin Trials 11:77-85. 2014..Clinical investigators are also susceptible to harboring high expectations. Little is known about parental motivations and expectations for clinical trials for rare pediatric disorders...
- Quality of life in rare genetic conditions: a systematic review of the literatureJulie S Cohen
Kennedy Krieger Institute, Baltimore, MD 21205, USA
Am J Med Genet A 152:1136-56. 2010..The field of research on QoL in rare genetic conditions will be advanced by uniting around a clear conceptualization of QoL and using more rigorous methodology with comprehensive measures of global QoL...
- Examination of standardized patient performance: accuracy and consistency of six standardized patients over timeLori A H Erby
The Johns Hopkins Bloomberg School of Public Health, Health, Behavior and Society, Baltimore, MD 21205, USA
Patient Educ Couns 85:194-200. 2011..To explore the accuracy and consistency of standardized patient (SP) performance in the context of routine genetic counseling, focusing on elements beyond scripted case items including general communication style and affective demeanor...