Telling Stories, Understanding Real Life Genetics: A User's Guide

This web resource contains 100 stories about living with a wide variety of genetics disorders. Each story is available to read online or to print; some have associated video clips. 

Each story also has a toolbox that includes points for discussion, activities, and other teaching resources. Stories can be accessed in a number of ways including by diagnosis, issues raised, clinical specialty, or life stage.


Type Website
CME Available No
Topic
Cost Free
Note

Case Studies

Date of Resource

Genomic Competencies

Experts from the disciplines listed below have tagged this resource as fulfulling genomic competencies.

Genetic Counselor

  • Genetics Expertise and Analysis
    • 2:   Integrate knowledge of psychosocial aspects of conditions with a genetic component to promote client well-being.
      • 2a:   Demonstrate an understanding of psychosocial, ethical, and legal issues related to genetic counseling encounters.
      • 2b:   Describe common emotional and/or behavioral responses that may commonly occur in the genetic counseling context.
      • 2c:   Recognize the importance of understanding the lived experiences of people with various genetic/genomic conditions.
      • 2d:   Evaluate the potential impact of psychosocial issues on client decision-making and adherence to medical management.
  • Interpersonal, Psychosocial and Counseling Skills
    • 10:   Use a range of genetic counseling skills and models to facilitate informed decision-making and adaptation to genetic risks or conditions.
      • 10a:   Demonstrate knowledge of psychological defenses, family dynamics, family systems theory, coping models, the grief process, and reactions to illness.
      • 10d:   Assess clients' psychosocial needs, and evaluate the need for intervention and referral.
    • 11:   Promote client-centered, informed, non-coercive and value-based decision-making.
      • 11a:   Recognize one's own values and biases as they relate to genetic counseling.
    • 13:   Apply genetic counseling skills in a culturally responsive and respectful manner to all clients.
      • 13a:   Describe how aspects of culture including language, ethnicity, life-style, socioeconomic status, disability, sexuality, age and gender affect the genetic counseling encounter.
      • 13d:   Maintain professional boundaries by ensuring directive statements, self-disclosure, and self-involving responses are in the best interest of the client.
    • 9:   Employ active listening and interviewing skills to identify, assess, and empathically respond to stated and emerging concerns.
      • 9a:   Elicit and evaluate client emotions, individual and family experiences, beliefs, behaviors, values, coping mechanisms and adaptive capabilities.
      • 9c:   Assess and respond to client emotional and behavioral cues, expressed both verbally and non-verbally, including emotions affecting understanding, retention, perception, and decision-making.
  • Education
    • 14:   Effectively educate clients about a wide range of genetics and genomics information based on their needs, their characteristics and the circumstances of the encounter.
      • 14a:   Identify factors that affect the learning process such as intellectual ability, emotional state, socioeconomic factors, physical abilities, religious and cultural beliefs, motivation, language and educational background.
      • 14f:   Present balanced descriptions of lived experiences of people with various conditions.
  • Professional Development & Practice
    • 17:   Act in accordance with the ethical, legal and philosophical principles and values of the genetic counseling profession and the policies of one's institution or organization.
      • 17b:   Recognize and respond to ethical and moral dilemmas arising in genetic counseling practice and seek outside consultation when needed.
    • 19:   Advocate for individuals, families, communities and the genetic counseling profession.
      • 19a:   Recognize the potential tension between the values of clients, families, communities and the genetic counseling profession.
      • 19b:   Support client and community interests in access- ing, or declining, social and health services and clinical research.