Barbara A Bernhardt

Summary

Affiliation: University of Pennsylvania
Country: USA

Publications

  1. pmc Women's experiences receiving abnormal prenatal chromosomal microarray testing results
    Barbara A Bernhardt
    Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA
    Genet Med 15:139-45. 2013
  2. pmc Why is genetic screening for autosomal dominant disorders underused in families? The case of hereditary hemorrhagic telangiectasia
    Barbara A Bernhardt
    Center for the Integration of Genetic Healthcare Technologies, University of Pennsylvania, Pennsylvania, USA
    Genet Med 13:812-20. 2011
  3. doi request reprint What keeps you up at night? Genetics professionals' distressing experiences in patient care
    Barbara A Bernhardt
    Department of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania 19104, USA
    Genet Med 12:289-97. 2010
  4. pmc Distress and burnout among genetic service providers
    Barbara A Bernhardt
    Department of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA
    Genet Med 11:527-35. 2009
  5. ncbi request reprint How do obstetric providers discuss referrals for prenatal genetic counseling?
    Barbara A Bernhardt
    Department of Health Policy and Management, Johns Hopkins Medical Institutions, Baltimore, Maryland, USA
    J Genet Couns 14:109-17. 2005
  6. pmc What do clinicians derive from partnering with their patients? A reliable and valid measure of "personal meaning in patient care"
    Gail Geller
    Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD 21205, USA
    Patient Educ Couns 72:293-300. 2008
  7. ncbi request reprint Houseofficers' reactions to media coverage about the sequencing of the human genome
    Gail Geller
    Genetics and Public Policy Studies, School of Medicine, Johns Hopkins University, Baltimore, MD 21205, USA
    Soc Sci Med 56:2211-20. 2003
  8. ncbi request reprint The quality of media reports on discoveries related to human genetic diseases
    Neil A Holtzman
    Genetics and Public Policy Studies, Institute of Genetic Medicine, The Johns Hopkins Medical Institutions, Baltimore, MD 21209, USA
    Community Genet 8:133-44. 2005
  9. doi request reprint The adolescent research participant: strategies for productive and ethical interviewing
    Rita Mack
    University of Pennsylvania, School of Nursing, Philadelphia, PA, USA
    J Pediatr Nurs 24:448-57. 2009
  10. ncbi request reprint Genomic variation: what does it mean?
    Marian Reiff
    Center for the Integration of Genetic Healthcare Technologies, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA
    LDI Issue Brief 18:1-4. 2013

Detail Information

Publications27

  1. pmc Women's experiences receiving abnormal prenatal chromosomal microarray testing results
    Barbara A Bernhardt
    Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA
    Genet Med 15:139-45. 2013
    ..We conducted a qualitative pilot study to explore the experiences of women receiving abnormal results from prenatal microarray testing performed in a research setting...
  2. pmc Why is genetic screening for autosomal dominant disorders underused in families? The case of hereditary hemorrhagic telangiectasia
    Barbara A Bernhardt
    Center for the Integration of Genetic Healthcare Technologies, University of Pennsylvania, Pennsylvania, USA
    Genet Med 13:812-20. 2011
    ..Genetic testing may identify relatives needing follow-up but is underused. We conducted this study to identify barriers to genetic testing for one disorder, hereditary hemorrhagic telangiectasia...
  3. doi request reprint What keeps you up at night? Genetics professionals' distressing experiences in patient care
    Barbara A Bernhardt
    Department of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania 19104, USA
    Genet Med 12:289-97. 2010
    ..To explore specific patient care experiences that genetics professionals associate with distress and the emotions engendered by those experiences...
  4. pmc Distress and burnout among genetic service providers
    Barbara A Bernhardt
    Department of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA
    Genet Med 11:527-35. 2009
    ..To determine the nature, sources, prevalence, and consequences of distress and burnout among genetics professionals...
  5. ncbi request reprint How do obstetric providers discuss referrals for prenatal genetic counseling?
    Barbara A Bernhardt
    Department of Health Policy and Management, Johns Hopkins Medical Institutions, Baltimore, Maryland, USA
    J Genet Couns 14:109-17. 2005
    ..In addition, obstetric providers' inadequate descriptions of prenatal genetic counseling may result in women being poorly prepared for genetic counseling sessions...
  6. pmc What do clinicians derive from partnering with their patients? A reliable and valid measure of "personal meaning in patient care"
    Gail Geller
    Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD 21205, USA
    Patient Educ Couns 72:293-300. 2008
    ..Burnout is high among clinicians and may relate to loss of "meaning" in patient care. We sought to develop and validate a measure of "personal meaning" that practitioners derive from patient care...
  7. ncbi request reprint Houseofficers' reactions to media coverage about the sequencing of the human genome
    Gail Geller
    Genetics and Public Policy Studies, School of Medicine, Johns Hopkins University, Baltimore, MD 21205, USA
    Soc Sci Med 56:2211-20. 2003
    ..However, this will require that physicians develop an appreciation of the newsmaking process, and how subtle interactions between politics, the media and science influence the "framing" of media coverage...
  8. ncbi request reprint The quality of media reports on discoveries related to human genetic diseases
    Neil A Holtzman
    Genetics and Public Policy Studies, Institute of Genetic Medicine, The Johns Hopkins Medical Institutions, Baltimore, MD 21209, USA
    Community Genet 8:133-44. 2005
    ..To examine (1) the quality of media reports (newspapers, television and public radio) of genetic discoveries with medical relevance and (2) factors related to the completeness and balance of the stories...
  9. doi request reprint The adolescent research participant: strategies for productive and ethical interviewing
    Rita Mack
    University of Pennsylvania, School of Nursing, Philadelphia, PA, USA
    J Pediatr Nurs 24:448-57. 2009
    ..Strategies presented are useful to clinicians who wish to establish a therapeutic rapport with young patients...
  10. ncbi request reprint Genomic variation: what does it mean?
    Marian Reiff
    Center for the Integration of Genetic Healthcare Technologies, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA
    LDI Issue Brief 18:1-4. 2013
    ..This Issue Brief summarizes a series of studies examining the uncertainties revolving around chromosomal microarray testing, which has become the new standard of practice in genetic testing of children with unexplained anomalies...
  11. doi request reprint Self-surveillance by adolescents and young adults transitioning to self-management of a chronic genetic disorder
    Ellen Giarelli
    University of Pennsylvania, Philadelphia, 19104, USA
    Health Educ Behav 37:133-50. 2010
    ..The patient-parent-physician relationship is the context for teaching adolescents and young adults self-surveillance skills. Self-surveillance by patients is first-line symptom assessment and an adjunct to medical monitoring...
  12. ncbi request reprint Scientists' and science writers' experiences reporting genetic discoveries: toward an ethic of trust in science journalism
    Gail Geller
    Phoebe Berman Bioethics Institute, Johns Hopkins University, Baltimore, Maryland 21205, USA
    Genet Med 7:198-205. 2005
    ..To describe the relationship between scientists and science writers and their experiences with media reporting of genetic discoveries...
  13. pmc "What does it mean?": uncertainties in understanding results of chromosomal microarray testing
    Marian Reiff
    Center for the Integration of Genetic Healthcare Technologies, Division of Translational Medicine and Human Genetics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA
    Genet Med 14:250-8. 2012
    ..This paper explores how families understand and make meaning of CMA test results, and identifies the needs of families undergoing CMA testing...
  14. doi request reprint Cost savings through molecular diagnosis for hereditary hemorrhagic telangiectasia
    Barbara A Bernhardt
    Division of Translational Medicine and Human Genetics, University of Pennsylvania, Philadelphia, Pennsylvania, USA
    Genet Med 14:604-10. 2012
    ..We set out to determine the impact of genetic testing on the cost of screening for HHT in at-risk relatives...
  15. ncbi request reprint Informed consent for enrolling minors in genetic susceptibility research: a qualitative study of at-risk children's and parents' views about children's role in decision-making
    Gail Geller
    Department of Pediatrics, School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA
    J Adolesc Health 32:260-71. 2003
    ....
  16. doi request reprint The role and impact of personal faith and religion among genetic service providers
    Gail Geller
    Johns Hopkins University, 624 N Broadway, Baltimore, MD 21205, USA
    Am J Med Genet C Semin Med Genet 151:31-40. 2009
    ..Efforts should be made to prevent or reduce the secrecy surrounding personal faith and religion among genetics professionals...
  17. ncbi request reprint The media and public reaction to genetic research
    Gail Geller
    Johns Hopkins University, Baltimore, MD, USA
    JAMA 287:773. 2002
  18. doi request reprint Genetic risk perception and reproductive decision making among people with epilepsy
    Katherine L Helbig
    Genetic Counseling Program, Arcadia University, Glenside, Pennsylvania, USA
    Epilepsia 51:1874-7. 2010
    ..The mean estimated risk of offspring to develop epilepsy was 26%, a 4-fold increase over estimated population risks. Genetic counseling may be beneficial for people with epilepsy, given the considerable overestimation of offspring risk...
  19. ncbi request reprint When genetic screening is useful, but not used
    Barbara A Bernhardt
    Center for Integration of Genetic Healthcare Technologies, University of Pennsylvania, Philadelphia, PA, USA
    LDI Issue Brief 16:1-4. 2011
    ..It explores the barriers to the use of genetic screening and has implications for the future as genetic technologies become more complex and produce more uncertainty...
  20. ncbi request reprint Active recruitment increased enrollment in a hereditary cancer registry
    Tara M Friebel
    Mid Atlantic Cancer Genetics Network, Department of Pathology, Johns Hopkins University School of Medicine, Park SB202, 600 N Wolfe St, Baltimore, MD 21287, USA
    J Clin Epidemiol 57:1172-6. 2004
    ..We sought to determine whether different recruitment methods used in a high-risk breast and ovarian cancer clinic yielded differences into enrollment into MACGN...
  21. doi request reprint Pregnancy as a proclamation of faith: Ultra-Orthodox Jewish women navigating the uncertainty of pregnancy and prenatal diagnosis
    Elly Teman
    Penn Center for the Integration of Genetic Healthcare Technologies, University of Pennsylvania, Philadelphia, USA
    Am J Med Genet A 155:69-80. 2011
    ..This research has implications for genetic service providers when discussing prenatal testing and fetal anomalies with Haredi women...
  22. doi request reprint Outpatient single-session pulmonary arteriovenous malformation embolization
    Scott O Trerotola
    Department of Radiology, Division of Interventional Radiology, University of Pennsylvania School of Medicine, Philadelphia, PA 19104, USA
    J Vasc Interv Radiol 20:1287-91. 2009
    ..The present report describes results from this center on an intent-to-treat basis...
  23. ncbi request reprint The decision to continue: the experiences and needs of parents who receive a prenatal diagnosis of holoprosencephaly
    Krista Redlinger-Grosse
    Medical Genetics Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA
    Am J Med Genet 112:369-78. 2002
    ..The results also provide the groundwork for prospective investigation into parents' decision-making process as they receive and adjust to prenatal diagnoses of an abnormality...
  24. doi request reprint Adolescents' transition to self-management of a chronic genetic disorder
    Ellen Giarelli
    University of Pennsylvania School of Nursing, Biobehavioral Research Center, Philadelphia, Pennsylvania 19104, USA
    Qual Health Res 18:441-57. 2008
    ..Transition to self-management is part of an evolving model of participation in life-long surveillance...
  25. doi request reprint Transillumination of the fingers for vascular anomalies: a novel method for evaluating hereditary hemorrhagic telangiectasia
    Emile R Mohler
    Department of Medicine, University of Pennsylvania School of Medicine, Philadelphia, USA
    Genet Med 11:356-8. 2009
    ..We describe a novel approach for detecting vascular abnormalities deep in the digits by means of a handheld illuminator...
  26. ncbi request reprint Pulmonary manifestations of Fabry disease and positive response to enzyme replacement therapy
    Woojin Kim
    Department of Radiology, University of Pennsylvania School of Medicine, Philadelphia, USA
    Am J Med Genet A 143:377-81. 2007
    ..Improvement was seen on pulmonary function tests and chest CT examinations. Enzyme replacement therapy may alleviate pulmonary dysfunction in patients with Fabry disease...
  27. ncbi request reprint Mapping the human genome: an assessment of media coverage and public reaction
    Ellen S Tambor
    Department of Health Policy and Management, School of Hygiene and Public Health, Johns Hopkins University, Baltimore, MD 21205, USA
    Genet Med 4:31-6. 2002
    ..To assess public reactions to the June 26, 2000, announcement that scientists had nearly finished mapping the human genome...