Transition from Research to Clinical Testing Role of the Genetic Counselor

Chapter 49 explores the differences between research genetic testing and clinical genetic testing and the transition from the former to the latter. Genetic counseling can be valuable to individuals who are participating in research genetic testing. Patients may have difficulty understanding the purpose, risks, and benefits of the study. In addition, many patients have expectations of receiving research testing results and do not appreciate the limitations of results reported from the research setting. It is strongly recommended that when genetic research results are disclosed to research participants, it be done by a professional able to provide genetic counseling.19 For many rare conditions, clinical testing is not available; therefore, research testing is the only option for families. When genetic testing is tran-sitioning from the research to the clinical setting, a genetic counselor can be a liaison between the patient and the laboratory and be responsible for informed consent and disclosure of results.

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