Pedigree

Summary: Pedigree and Family History

Current genetic counseling job tasks were determined by the American Board of Genetic Counseling as the outcome of a Genetic
Counseling Practice Analysis (Hampel et al., 2009). The following lists the Pedigree and Family History tasks:

  1. Tailor questioning for the individual case

  2. Elicit history

  3.  Facilitate recall (e.g., symptoms, diagnoses, treatments)

  4.  Document ethnicity and consanguinity

  5.  Construct a complete pedigree using standardized pedigree nomenclature

  6.  Identify the following:

    • a. family dynamics

    • b. emotional responses

    • c. diagnoses requiring confirmation.

This case discusses the dynamics of taking a family history and drawing the pedigree for a lesbian couple in prenatal genetic counseling. Genetic counselors on the pathway to increasing their cultural competence should first engage in self-assessment on the GLBT continuum. We suggested two self-assessment measures. These self-awareness activities help a genetic counselor honestly evaluate his/her willingness and ability to work effectively with a lesbian couple, or with other clients whose sexual orientation is not heterosexual. If the counselor is not where he/she wants to be, he/she might consider talking to other counselors in peer supervisory venues, engaging in cultural immersion activities, or learning more about this culture by reviewing the suggested resources.

When meeting with a lesbian couple, the genetic counselor should only ask questions that will be directly relevant to the session. By using open-ended questions, the counselor allows clients opportunities to respond in ways that are most comfortable and salient to their particular situation. Because genetic counselors frequently discuss reproductive and relationship issues with their clients, they need to be comfortable assessing clients’ past experiences related to their sexual orientation and current sexual identity. The genetic counselor should use the pedigree taking activity to promote trust and understand the clients’ definition of family. The couple’s current and past relationships should be acknowledged by using the appropriate pedigree nomenclature in an atmosphere that conveys openness to client’s personal preferences and decisions. It is important to assure genetic counseling clients about the confidentiality of the session.

Genetic counselors’ standard of practice is to take detailed family history information and draw pedigrees on all clients. The time and resources available to enter family history data is already a documented concern for primary care providers (Scheuner, 2009). With our experience, we have the opportunity to demonstrate to other healthcare professionals the details and complexities of this task. Standards of pedigree nomenclature are changing over time due to new reproductive technologies and choices and social and legal factors. The imminent emergence of electronic medical records as the universal standard for medical documentation in U.S. health care settings challenges genetic counselors to develop streamlined family history intake and pedigree drawing methods (Bennett, 2008). In addition, we suggest that genetic counselors should not overlook tools used in other professions to document family dynamics and emotional responses, such as genograms. Genograms may be a useful working tool for exploring biological, sexual and cultural issues in genetic counseling. However, it is important for the genetic counselor to obtain explicit permission for all personal and relationship information included in the medical record. The culturally competent genetic counselor is able to confidently anticipate and accommodate all variations and complexities of sexual orientation and family structure.  According to Epstein (2008), parents and prospective parents in LGBTQ communities want health professionals to take on a positive demeanor when helping them to build and nurture their family. This positive attitude "requires a deep level of knowledge translated into behaviors and practices that recognize and acknowledge the histories, cultures and values of LGBTQ communities. This is what is sometimes referred to as ‘cultural competency’”.

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