Testing Options

Facilitating Decision Making

Decision making is a complex construct that lies at the heart of most genetic counseling encounters. Values, beliefs, previous experiences, information, support systems, family background, personality, risk perception, perceived severity, social expectations, cultural roots, financial status, emotional preparation, real and perceived options, personal goals, and religion are a few of the many salient factors that individuals may consider when making decisions. Decisions may be complex, heart-wrenching, and far-reaching. Often, risks and events are perceived by clients as binary, that they either happen or they don’t. When an unwanted event occurs, the genetic counselor may wish to explore why certain options and decisions seem best to the clients rather than try to understand their decision as correlating to specific genetic and risk information. Message framing, and the degree of focus on certain topics or options over others, have been shown to influence client decisions (Salkovskis et al., 1999). Decisions are strongly influenced by focusing on negative aspects of test results and immediate harms.

The genetic counselor’s role in helping patients in the decision making process is generally regarded as providing impartial and nondirective counseling. Regarding genetic testing of any kind, pre-test counseling provides an important opportunity for the genetic counselor to provide extensive information without polarizing the issues negatively or positively. Counseling interventions such as role plays, role reversal and using scenarios can help clients consider the effects of testing options and possible results on themselves and their families.

Genetic counselors generally accept that nondirective counseling with information as well as guidance and advice gained from listening to a client is usually helpful when clients struggle with or feel overwhelmed by the decision making process. By taking this approach, the counselor becomes a source of support, as well as a trusted partner with whom the client can explore ideas, outcomes, fears, and scenarios about options and possible outcomes. In the context of working with religious/spiritual families, the genetic counselor might ask the client, “Do you have religious concerns about these options?” and/or “Would you like some time to consult with a pastor about this?” (Anderson, 2002). These questions legitimize the uncertainty families may feel about their situation, and facilitate reaching out to their faith community.

Anderson (2002) states: “Families whose choices diverge from those suggested by denominational doctrine will benefit from the exercise of assessing their moral reasoning in light of the precepts of their faith communities. Although it may appear ‘easier to ask forgiveness than to ask permission,’ ultimately, facing the issues squarely will provide greater opportunity for reconciliation, healing and spiritual growth.” Cure is not possible for many genetic conditions, but there is always room for healing. Healing may be experienced as an acceptance of the condition and peace with the situation. This healing may be considered spiritual (Puchalski, 2001).

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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