Ausgabe 5/2016
Inhalt (27 Artikel)
Thank You to Reviewers
The Genetic Counselor’s Role in Managing Ethical Dilemmas Arising in the Laboratory Setting
Jessica R. Balcom, Katrina E. Kotzer, Lindsey A. Waltman, Jennifer L. Kemppainen, Brittany C. Thomas
Balancing Genetics (Science) and Counseling (Art) in Prenatal Chromosomal Microarray Testing
Allison Werner-Lin, Judith L. M. McCoyd, Barbara A. Bernhardt
2013 Review and Update of the Genetic Counseling Practice Based Competencies by a Task Force of the Accreditation Council for Genetic Counseling
Debra Lochner Doyle, Rawan I. Awwad, Jehannine C. Austin, Bonnie J. Baty, Amanda L. Bergner, Stephanie J. Brewster, Lori A. H. Erby, Cathi Rubin Franklin, Anne E. Greb, Robin E. Grubs, Gillian W. Hooker, Sarah Jane Noblin, Kelly E. Ormond, Christina G. Palmer, Elizabeth M. Petty, Claire N. Singletary, Matthew J. Thomas, Helga Toriello, Carol S. Walton, Wendy R. Uhlmann
Psychological Distress, Anxiety, and Depression of Cancer-Affected BRCA1/2 Mutation Carriers: a Systematic Review
Johanna Ringwald, Christina Wochnowski, Kristin Bosse, Katrin Elisabeth Giel, Norbert Schäffeler, Stephan Zipfel, Martin Teufel
A Review on Spinal Muscular Atrophy: Awareness, Knowledge, and Attitudes
Rebecca R. Moultrie, Julia Kish-Doto, Holly Peay, Megan A. Lewis
MTHFR: Addressing Genetic Counseling Dilemmas Using Evidence-Based Literature
Brooke Levenseller Levin, Elizabeth Varga
Obsessive-Compulsive Disorder: The Process of Parental Adaptation and Implications for Genetic Counseling
Heather Andrighetti, Alicia Semaka, S. Evelyn Stewart, Cheryl Shuman, Robin Hayeems, Jehannine Austin
Spiritual Exploration in the Prenatal Genetic Counseling Session
Katelynn G. Sagaser, S. Shahrukh Hashmi, Rebecca D. Carter, Jennifer Lemons, Hector Mendez-Figueroa, Salma Nassef, Brent Peery, Claire N. Singletary
Impaired Health-Related Quality of Life in Children and Families Affected by Methylmalonic Acidemia
Kimberly Splinter, Anna-Kaisa Niemi, Rachel Cox, Julia Platt, Monisha Shah, Gregory M. Enns, Mureo Kasahara, Jonathan A. Bernstein
“Be Prepared if I Bring It Up:” Patients’ Perceptions of the Utility of Religious and Spiritual Discussion During Genetic Counseling
Amanda Bartenbaker Thompson, Deborah Cragun, J. E. Sumerau, Ryan T. Cragun, Vanessa De Gifis, Angela Trepanier
Lifestyle Risk Factors Among People Who Have Had Cancer Genetic Testing
John M. Quillin
Spanish- and English-Speaking Pregnant Women’s Views on cfDNA and Other Prenatal Screening: Practical and Ethical Reflections
Erin Floyd, Megan A. Allyse, Marsha Michie
Genetic Testing and Post-Testing Decision Making among BRCA-Positive Mutation Women: A Psychosocial Approach
Sharlene Hesse-Biber, Chen An
Elucidating Genetic Counseling Outcomes from the Perspective of Genetic Counselors
Heather A. Zierhut, K. M. Shannon, D. L. Cragun, S. A. Cohen
“I Feel Lucky” – Gratitude Among Young Adults with Phenylketonuria (PKU)
Plata Sofie Diesen
Analysis of Advantages, Limitations, and Barriers of Genetic Counseling Service Delivery Models
Stephanie A. Cohen, Rachelle C. Huziak, Shanna Gustafson, Robin E. Grubs
Not the End of the Odyssey: Parental Perceptions of Whole Exome Sequencing (WES) in Pediatric Undiagnosed Disorders
Allyn McConkie Rosell, Loren D. M. Pena, Kelly Schoch, Rebecca Spillmann, Jennifer Sullivan, Stephen R. Hooper, Yong-Hui Jiang, Nicolas Mathey-Andrews, David B. Goldstein, Vandana Shashi
The Integration of Noninvasive Prenatal Screening into the Existing Prenatal Paradigm: a Survey of Current Genetic Counseling Practice
Emily Suskin, Laura Hercher, Kathleen Erskine Aaron, Komal Bajaj
Impact of Genomic Counseling on Informed Decision-Making among ostensibly Healthy Individuals Seeking Personal Genome Sequencing: the HealthSeq Project
Sabrina A. Suckiel, Michael D. Linderman, Saskia C. Sanderson, George A. Diaz, Melissa Wasserstein, Andrew Kasarskis, Eric E. Schadt, Randi E. Zinberg
The Role of Appearance in Adolescents’ Experiences of Neurofibromatosis Type 1: A Survey of Young People and Parents
Jenny Barke, Jane Coad, Diana Harcourt
Quality of Life in Adults with Neurofibromatosis 1 in Brazil
Natália Parenti Bicudo, Balduíno Ferreira de Menezes Neto, Lucimar Retto da Silva de Avó, Carla Maria Ramos Germano, Débora Gusmão Melo
Family Communication and Cascade Testing for Fragile X Syndrome
Melissa Raspa, Anne Edwards, Anne C. Wheeler, Ellen Bishop, Donald B. Bailey Jr.
Experiences of Being Heterozygous for Fabry Disease: a Qualitative Study
Charlotte von der Lippe, Jan C. Frich, Anna Harris, Kari Nyheim Solbrække
Should I Perform Genetic Testing? A Qualitative Look into the Decision Making Considerations of Religious Israeli Undergraduate Students
Merav Siani, Orit Ben-Zvi Assaraf
“Something Extra on Chromosome 5”: Parents’ Understanding of Positive Prenatal Chromosomal Microarray Analysis (CMA) Results
Sarah A. Walser, Allison Werner-Lin, Amita Russell, Ronald J. Wapner, Barbara A. Bernhardt
NIPT and Informed Consent: an Assessment of Patient Understanding of a Negative NIPT Result
Julie L. Piechan, Karrie A. Hines, Daniel L. Koller, Kristyne Stone, Kimberly Quaid, Wilfredo Torres-Martinez, Divya Wilson Mathews, Tatiana Foroud, Lola Cook