Issue 5/2018
Content (30 Articles)
Genetic Counseling in the Era of Genomics: What’s all the Fuss about?
Gemma R Brett, Ella J Wilkins, Emma T Creed, Kirsty West, Anna Jarmolowicz, Giulia M Valente, Yael Prawer, Elly Lynch, Ivan Macciocca
Family Communication About Genetic Risk of Hereditary Cardiomyopathies and Arrhythmias: an Integrative Review
Lisa L. Shah, Sandra Daack-Hirsch
Psychosocial Impact of a Positive Gene Result for Asymptomatic Relatives at Risk of Hypertrophic Cardiomyopathy
Carissa Bonner, Catherine Spinks, Christopher Semsarian, Alex Barratt, Jodie Ingles, Kirsten McCaffery
Pediatric and Adult Recommendations Vary for Sibling Testing in Cystic Fibrosis
Kimberly L. Brown, Patrick A. Flume
Development and Pilot Testing of a Decision Aid for Genomic Research Participants Notified of Clinically Actionable Research Findings for Cancer Risk
Amanda M. Willis, Sian K. Smith, Bettina Meiser, Mandy L. Ballinger, David M. Thomas, Martin Tattersall, Mary-Anne Young
Reduction of Health Care Costs and Improved Appropriateness of Incoming Test Orders: the Impact of Genetic Counselor Review in an Academic Genetic Testing Laboratory
Emily Wakefield, Haley Keller, Hannah Mianzo, Chinmayee B. Nagaraj, Sanjukta Tawde, Elizabeth Ulm
Parenting a Child with Phenylketonuria (PKU): an Interpretative Phenomenological Analysis (IPA) of the Experience of Parents
Katie Carpenter, Anja Wittkowski, Dougal J. Hare, Emma Medford, Stewart Rust, Simon A. Jones, Debbie M. Smith
Understanding Adult Participant and Parent Empowerment Prior to Evaluation in the Undiagnosed Diseases Network
Christina G. S. Palmer, Allyn McConkie-Rosell, Ingrid A. Holm, Kimberly LeBlanc, Janet S. Sinsheimer, Lauren C. Briere, Naghmeh Dorrani, Matthew R. Herzog, Sharyn Lincoln, Kelly Schoch, Rebecca C. Spillmann, Elly Brokamp
Health Survey of Adults with Neurofibromatosis 1 Compared to Population Study Controls
Krister W. Fjermestad, Livø Nyhus, Øivind J. Kanavin, Arvid Heiberg, Lise B. Hoxmark
Operationalizing the Reciprocal Engagement Model of Genetic Counseling Practice: a Framework for the Scalable Delivery of Genomic Counseling and Testing
Tara Schmidlen, Amy C. Sturm, Shelly Hovick, Laura Scheinfeldt, J. Scott Roberts, Lindsey Morr, Joseph McElroy, Amanda E. Toland, Michael Christman, Julianne M. O’Daniel, Erynn S. Gordon, Barbara A. Bernhardt, Kelly E. Ormond, Kevin Sweet
Informed Decision-Making in the Context of Prenatal Chromosomal Microarray
Jessica Baker, Cheryl Shuman, David Chitayat, Syed Wasim, Nan Okun, Johannes Keunen, Renee Hofstedter, Rachel Silver
Pregnant Women’s Perspectives on Expanded Carrier Screening
Lauren Propst, Gwendolyn Connor, Megan Hinton, Tabitha Poorvu, Jeffrey Dungan
The Changing Age of Individuals Seeking Presymptomatic Genetic Testing for Huntington Disease
Melissa A. Holman, John Quillin, Timothy P. York, Claudia M. Testa, Ami R. Rosen, Virginia W. Norris
Pregnant Genetic Counselors in an Era of Advanced Genomic Tests: What Do the Experts Test Prenatally?
Shiri Shkedi-Rafid, Yael Hashiloni-Dolev
Mindfulness Among Genetic Counselors Is Associated with Increased Empathy and Work Engagement and Decreased Burnout and Compassion Fatigue
Julia Silver, Colleen Caleshu, Sylvie Casson-Parkin, Kelly Ormond
A Clinical Decision Support Tool to Predict Cancer Risk for Commonly Tested Cancer-Related Germline Mutations
Danielle Braun, Jiabei Yang, Molly Griffin, Giovanni Parmigiani, Kevin S. Hughes
Parkinson’s Disease: Patients’ Knowledge, Attitudes, and Interest in Genetic Counseling
Kristin A. Maloney, Dina S. Alaeddin, Rainer von Coelln, Shannan Dixon, Lisa M. Shulman, Katrina Schrader, Yue Guan
Factors Influencing Clinical Follow-Up for Individuals with a Personal History of Breast and/or Ovarian Cancer and Previous Uninformative BRCA1 and BRCA2 Testing
Sarah E. Chadwell, Hua He, Sara Knapke, Jaime Lewis, Rebecca Sisson, Jennifer Hopper
Why Patients Decline Genomic Sequencing Studies: Experiences from the CSER Consortium
Laura M. Amendola, Jill O. Robinson, Ragan Hart, Sawona Biswas, Kaitlyn Lee, Barbara A. Bernhardt, Kelly East, Marian J. Gilmore, Tia L. Kauffman, Katie L. Lewis, Myra Roche, Sarah Scollon, Julia Wynn, Carrie Blout
Exploring the Issues Surrounding Clinical Exome Sequencing in the Prenatal Setting
Swetha Narayanan, Bruce Blumberg, Marla L. Clayman, Vivian Pan, Catherine Wicklund
Attitudes Toward and Uptake of Prenatal Genetic Screening and Testing in Twin Pregnancies
Kathryn M. Reese, Jennifer Czerwinski, Sandra Darilek, Anthony Johnson, Malorie Jones, Claire N. Singletary
Development and Validation of the Genetic Counseling Self-Efficacy Scale (GCSES)
Sarah Caldwell, Katie Wusik, Hua He, Geoffrey Yager, Carrie Atzinger
Talking Points: Women’s Information Needs for Informed Decision-Making About Noninvasive Prenatal Testing for Down Syndrome
Aimée C. Dane, Madelyn Peterson, Yvette D. Miller
The Process of Disclosure: Mothers’ Experiences of Communicating X-Linked Carrier Risk Information to At-Risk Daughters
Amy Goldman, Alison Metcalfe, Rhona MacLeod
Managing Couple Conflict During Prenatal Counseling Sessions: An Investigation of Genetic Counselor Experiences and Perceptions
Kara Schoeffel, Patricia McCarthy Veach, Karol Rubin, Bonnie LeRoy
Involvement and Influence of Healthcare Providers, Family Members, and Other Mutation Carriers in the Cancer Risk Management Decision-Making Process of BRCA1 and BRCA2 Mutation Carriers
Athena Puski, Shelly Hovick, Leigha Senter, Amanda Ewart Toland
Identifying Factors Underlying the Decision for Sickle Cell Carrier Screening Among African Americans Within Middle Reproductive Age
Tilicia L. Mayo-Gamble, Susan E. Middlestadt, Hsien-Chang Lin, Jennifer Cunningham-Erves, Priscilla Barnes, Pamela Braboy Jackson
Letter to the Editor: Response to Cox (2018)
Teresa Gavaruzzi, Alessandra Tasso, Marzena Franiuk, Liliana Varesco, Lorella Lotto