Getting the Message Across

Communication with Diverse Populations in Clinical Genetics

Edited by Jennifer Wiggins and Anna Middleton

First text to focus on practical communication issues in genetic counseling and clinical genetics
Practical, portable reference guide that will appeal to those new and familiar with clinical practice
Population-based chapters with examples based on real-life cases
Timeless subject matter unaffected by rapid developments in field of genetics

Getting the Message Across

Communication with Diverse Populations in Clinical Genetics

Edited by Jennifer Wiggins and Anna Middleton

Description

Communicating with patients about genetic concepts is fraught with complications. In addition to the hazy takeaway messages and the likelihood of peripheral findings, the diverse cultural backgrounds of patients in a genetics clinic present another layer of challenge for clinicians and genetic counselors in their aim to communicate important findings effectively and respectfully.

This book provides practical advice to assist genetic counselors, geneticists, and other health professionals wanting to engage appropriately with different clients from different communities — patients who are hearing and/or visually impaired, patients with diverse sex development or religious backgrounds, and those who are available only through interpreter or telephone consultation. With chapter-based practical entries on effective communication with these and other diverse population groups, this volume is an invaluable pocket tool for clinicians and counselors to effectively get the message across.

Getting the Message Across

Communication with Diverse Populations in Clinical Genetics

Edited by Jennifer Wiggins and Anna Middleton

Foreword
Lauren Kerzin-Storrar
Definition of Genertic Councelling
Preface
Jennifer Wiggins and Anna Middleton
Acknowledgments
Contributors
1: Communicating with Clients who are D/deaf or hard of hearing
Anna Middleton and Christina Palmer
2: Communicating with Clients who are visually impaired
Georgina Hall and Alison Clarke
3: Communicating with Clients who have diverse sex development
Lih-Mei Liao and Margaret Simmonds
4: Communicatin with Clients from the Jewish community
Sara Levene
5: Communicating with Clients from the Irish Traveller community
Jacqueline Turner
6: Communicating with Clients from the Pakistani Muslim community
Mushtaq Ahmed
7: Communicating with Clients who disclose sexual abuse
Alan Phillips
8: Communicating with Teenagers
Anna Gregorowski
9: Communicating with Children who have intellectual disability
Jeremy Turk
10: Communicating with Clients who are terminally ill
Anna-Marie Stevens and Jayne Wood
11: Communicating with Clients who have dementia
Rachel Taylor
12: Communication from an interpreter's perspective
Nicki Cornwall
13: Communication via the telephone or video conferencing
Kelly Kohut and Kathryn Myhill

Getting the Message Across

Communication with Diverse Populations in Clinical Genetics

Edited by Jennifer Wiggins and Anna Middleton

Author Information

Edited by Jennifer Wiggins, Senior Genetic Counselor, Cancer Genetics Unit, Royal Marsden Hospital, and Anna Middleton, Ethics Researcher and Registered Genetic Counselor, Wellcome Trust Sanger Institute

Jennifer Wiggins is a registered genetic counselor (UK) who has worked in clinical genetics services for 17 years. She has specialised in both pre-natal and cancer genetics. She has been the Vice-Chair of the Association of Genetic Nurses and Counselors and is a mentor and assessor for the Genetic Counselor Registration Board (UK and ROI) and is currently a senior genetic counselor at The Royal Marsden NHS Foundation Trust, London, UK. Anna Middleton has had two parallel careers, the first as a registered genetic counselor working in various regional clinical genetics services in the UK and the second as a social scientist exploring the ethical implications of genetic and genomic technologies. She has a PhD in Genetics and Psychology and is currently working as an Ethics Researcher at the Wellcome Trust Sanger Institute in Cambridge, UK. She has been the Vice-Chair of the Genetic Counselor Registration Board and on the editorial board for the Journal of Genetic Counseling (US).

Contributors:

Mushtaq Ahmed, BSc, PGCE, PhD, RGC
Principal Genetic Counselor
Yorkshire Regional Genetics Service
Department of Clinical Genetics
Chapel Allerton Hospital

Alison Clarke RN, RHV, RGC, BSc, MSc
Principal Genetic Counsellor
St Mary's Hospital

Nicki Cornwell, BA, MPhil, CQSW
Private author

Anna Gregorowski, BSc, MA, RSCN, RGN
Nurse Consultant, Adolescent Health
Great Ormond Street Hospital for Children
NHS Foundation Trust

Georgina Hall, MSc, RGC
Principal Genetic Counselor and Honorary Research Associate
Manchester Academic Health Science Centre
St. Mary's Hospital

Kelly Kohut, MS, CGC
Genetic Counselor
The Royal Marsden NHS Foundation Trust

Sara Levene, MSc, RGC
Principal Genetic Counselor
Clinical Genetics Department
Guy's and St. Thomas' NHS Foundation Trust

Lih-Mei Liao, PhD, CPsychol, FBPsS
Consultant Clinical Psychologist & Professional Lead for Psychological Services
Institute for Women's Health
University College London

Kathryn Myhill
The Institute of Cancer Research
The Royal Marsden NHS Foundation Trust

Christina Palmer, MS, PhD
Professor
Department of Psychiatry & Biobehavioral Sciences
Department of Human Genetics
University of California, Los Angeles

Alan Phillips, BSc, MSc
Head, Psychosocial Services
Alder Hey Children's NHS Foundation Trust

Margaret Simmonds, MA, MSc, PhD
UK Androgen Insensitivity Syndrome Support roup

Anna-Marie Stevens, RN, MSc
Macmillan Nurse Consultant Cancer Palliative Care
The Royal Marsden and Royal Brompton Palliative Care Service
The Royal Marsden NHS Foundation Trust

Rachel Taylor, RN, BSc, MSc
Consultant Nurse, Neurogenetics
University College London Hospitals NHS Foundation Trust

Jeremy Turk, MD, BSc, FRCPsych, FRCPCH, DCH
Professor of Developmental Psychiatry
Consultant Child & Adolescent Psychiatrist
Institute of Psychiatry & St. George's
University of London
South London & Maudsley Foundation NHS Trust

Jacqueline Turner, MSc, BA, RGC
National Centre for Medical Genetics
Our Lady's Children's Hospital

Jayne Wood, MBBS, MRCP, BSc, PgDip
Consultant Palliative Medicine
The Royal Marsden and Royal Brompton Palliative Care Service
The Royal Marsden NHS Foundation Trust

Getting the Message Across

Communication with Diverse Populations in Clinical Genetics

Edited by Jennifer Wiggins and Anna Middleton

From Our Blog

'No choice for you' according to the ACMG

By Dr. Anna Middleton The American College of Medical Genetics (ACMG) has recently published recommendations for reporting incidental findings (IFs) in clinical exome and genome sequencing. These recommendations advocate actively searching for a set of specific IFs unrelated to the condition under study. For example, a two-year-old child may have his (and his parents') exome sequenced to explore a diagnosis for intellectual disability and at the same time will be tested for a series of cancer and cardiac genetic variants.

Posted on April 28, 2013

Read the blog post