A Guide to Genetic Counseling

A Guide to Genetic Counseling
	Contents
	Foreword
	Preface
	Contributors
	1 The Practice of Genetic Counseling
		The Practice of Genetic Counseling
		Definition and Goals of Genetic Counseling
		Components of the Genetic Counseling Interaction
		Counseling Contexts and Situations
		Providers of Genetic Counseling
		Professional and Educational Landmarks in Genetic Counseling
		Professional Growth and Skill Acquisition
		Appendix: Practice-Based Competencies
		Genetic Counselors’ Scope of Practice
		References
	2 The Ultimate Genetic Tool: The Family History
		The Evolution of the Pedigree
		Family History Basics
		Gathering the Information and Constructing a Pedigree
		Interpreting the Family History and Pedigree Analysis
		Psychosocial Aspects of Obtaining a Family History
		Summary
		References
	3 Interviewing: Beginning to See Each Other
		Getting Started
		Breaking the Ice
		Setting the Stage: Core Qualities
		Creating a Working Agreement
		Verbal and Nonverbal Communication
		Specific Interviewing Techniques
		Obtaining Pedigrees
		Assessment
		Summary
		Acknowledgments
		References
	4 Thinking It All Through: Case Preparation and Management
		Introduction
		The Initial Intake
		Billing Issues for Genetics Clinic Visits
		Preparing a Case
		Finding Information on Genetic Conditions
		Practice Guidelines
		Finding Support/Advocacy Groups and Patient Resources
		Performing a Risk Assessment
		Locating and Developing Counseling Aids
		Genetic Testing
		Managing the Clinic Visit
		Referrals to Other Specialists
		Referrals of Family Members to Genetics Clinics
		Case Documentation
		Is a Genetics Case Ever Complete?
		Conclusions
		References
	5 Psychosocial Counseling
		Introduction
		Psychosocial Assessment and the Structure of a Session
		The Patient’s Story
		Achieving Dynamic Psychological Engagement: The Working Alliance
		Disruptions in the Working Alliance
		Discussing Difficult Issues and Giving Bad News
		Reactions and Psychologically Challenging Experiences
		Counselees’ Coping Styles
		Theories that Surround Our Work
		Men in Our Practice
		Supervision: Refining the Psychological Lens
		Conclusion
		References
	6 Patient Education
		Sharing Expertise
		Adult Learners
		Models of Adult Learning
		Genetic Counseling in the Information Age
		The Genetic Counseling Session—A Vehicle for Patient Education
		Additional Aspects of Patient Learning
		Application of Instructional Aids for Patient Education
		Tenets of Health Education and Promotion: Application to Genetic Counseling
		Future Directions
		Summary
		References
	7 Risk Communication and Decision-Making
		Factors Impacting Risk Communication
		Models of Risk Communication
		Practical Aspects of Communicating Risk
		The Family and Risk Communication
		Factors Impacting Decision-Making
		Models of Decision-Making
		Practical Aspects of Decision-Making
		Nondirectiveness
		Use of Aids
		Cultural Tailoring
		Summary
		References
	8 The Medical Genetics Evaluation
		Introduction
		The Components of a Medical Genetics Evaluation
		Diagnostic Studies
		Tools and Resources of the Clinical Geneticist
		Utility of Clinical Case Conferences and Outside Expert Consultants
		Summary
		References
	9 Understanding Genetic Testing
		Introduction
		Defining Genetic Testing
		Test Parameters
		Reasons for False Positives and False Negatives
		Complexities of Negative Test Results
		Variants of Unknown Significance
		The \"Ideal Genetic Test\"
		Ensuring Quality Clinical Genetic Testing
		Development of a New Clinical Genetic Test
		Global Testing Issues and Establishing Policy and Practice Guidelines
		Complexities of New Technologies in the Genetic Counseling Session: Illustrative Cases
		Conclusions
		References
	10 Medical Documentation
		The Importance of Medical Documentation
		When Should Medical Documentation Occur?
		Who Records in the Chart?
		Types of Medical Documentation
		Recommendations for Medical Documentation
		Disclosure of Information Contained in Medical Records
		Medical Documentation for Billing and Reimbursement
		Documentation That is Subject to External Review
		Retention of Medical Records
		Summary
		Appendix: Patient Letter Outline
		References
	11 Multicultural Counseling
		The Challenge
		Multicultural Competency
		Diversity is Cultural, Not Biophysical
		The Religion Factor
		American Values Compared
		Four Basic Core Values
		Pregnancy, Birth, and Family
		Beliefs About the Causes of Disease and Disorders
		Communicating Across Cultural Boundaries
		Conclusion
		Appendix: Responses to Critical Incidents
		References
		Further Reading
	12 Ethical and Legal Issues
		Ethical Issues
		NSGC Code of Ethics
		Legal Issues
		Areas of Practice Raising Ethical and Legal Questions
		Conclusions
		Reading List
	13 Student Supervision: Strategies for Providing Direction, Guidance, and Support
		Introduction
		Definitions of Supervision
		Genetic Counselors as Clinical Supervisors: Responsibilities
		Supervision Goals and Discussion Topics
		Supervisor and Student Roles
		Student Responsibilities
		Supervision Methods
		Methods for Assessing Student Skills
		Supervisee and Supervisor Characteristics
		Common Supervision Challenges
		Supervision Agreements for Clinical Supervision
		Conclusions
		Appendix: Example Clinical Supervision Agreement for the Genetic Counseling Setting
		References
	14 Genetic Counseling Research: Understanding the Basics
		Why Do Research?
		Defining Research: A Way of Thinking
		What Makes Scientific Knowledge Different?
		Choosing an Experimental Approach
		The Research Process
		Data Collection and Analysis
		Presentation: Pulling It all Together
		The Human Side of the Equation–Ethical Research
		Seeing It Through to the End
		Conclusion
		References
	15 Professional Identity and Development
		Introduction
		The Genetic Counseling Profession and Role Expansion
		Professional Identity
		Professional Conduct
		Certification and Licensure of Genetic Counselors
		Lifelong Learning Practices
		Professional Opportunities in One’s Own Institution
		Participation in Professional Organizations
		Involvement in Policy-Making
		A Final Thought on Professional Development
		Acknowledgments
		Appendix: Clinical Genetics Professional Societies
		References
	16 Genetic Counselors as Educators
		Introduction
		Education for Healthcare Professionals
		Examples of Training and Continuing Education of Healthcare Professionals
		Education for the Lay Public
		Science Education Standards
		Education for Students and Science Teachers
		Education for Older Students (High School, College, and Adults)
		Education for Young Students (Elementary to Middle School)
		Teaching about Ethics and Public Policy
		Effective Presentations: How to Prepare
		Tips for Speaking with the Media
		Developing Education Materials
		Conclusion
		References
		Resources
	17 Evolving Roles, Expanding Opportunities
		Introduction
		Evolution of the Profession
		Expansion of the Profession
		Development of Clinical Specialty Areas in Genetic Counseling
		Translatable Skills
		Role Expansion: From the Traditional Genetics Clinic Setting and Beyond
		Acquiring New Skills and Knowledge
		Positioning Oneself for a New Role
		Looking Ahead: Visioning
		Conclusion
		Appendix: Tools for Working Outside the Box: What Genetic Counselors can Bring to a Non-Traditional Role
		References
	18 Putting It All Together: Three Case Examples
		Introduction (Jane L. Schuette)
		Pediatric Case (Cheryl Shuman)
		Reproductive Genetics Case (Donna F. Blumenthal)
		Cancer Genetics Case (Monica, L. Marvin)
		References
	Index