Genetic Counseling

School of Health and Human Sciences

Victoria RothAn Examination Of The Factors Contributing To The Expansion Of Subspecialty Genetic Counseling
Capstone Project Committee: Nancy Callanan, MS, CGC, Kate Foreman, MS, CGC, Elizabeth Heise, MS, CGC, Scott Richter, PhD (Statistical Consultant)
Background: A defining feature of genetic counseling is the transferrable nature of the common skill set. Since the establishment of the first graduate program in 1969, genetic counseling has moved into almost every medical specialty and subspecialty. While the majority of genetic counselors still specialize in the areas of prenatal, pediatric, and cancer genetic counseling, other subspecialties such as cardiology, neurogenetics, and pharmacogenetics are emerging in the field. What remained unknown was how these subspecialties initially become established in the field of genetic counseling.

Goals: To fill this literature gap, this study was designed to answer three research questions: (1) What common factors establish a need for a genetic counselor in a subspecialty setting?  (2) How do genetic counselors in subspecialties establish their positions? (3) Once established, how does the position of these genetic counselors evolve as the subspecialty expands?

Methods: Two phases of data collection were employed to answer the research questions. Phase I consisted of semi-structured interviews with subspecialized genetic counselors in cardiovascular genetics, neurogenetics, and psychiatric genetics. Phase II consisted of a broader survey distributed through the National Society of Genetic Counselors ListServ.

Results: Ten genetic counselors were interviewed for phase I of the data collection process and 144 genetic counselors responded to the phase II survey with a core of 68 participants. A genetic counselor’s previous interest in the subspecialty area was identified as a driving factor for position creation by the phase I participants and by 42.3% of the phase II survey participants. Many personal narratives in phase I and 42% of phase II participants identified physician interest as a driving factor for position creation. 71.4% of phase II participants reported an increase in departmental funding since starting their position.

Conclusion: Both phases of data collection supported the success of genetic counselors in subspecialty medicine. Collectively, the personal narratives showed a variety of ways in which subspecialized positions were established. However, common factors for position creation were genetic counselor interest, physician interest, clinical need, and the availability of genetic testing . Changes seen following the creation of the position included a transition to departmental funding, an increase in genetic counselor responsibilities, and increased effort by genetic counselors to consolidate the collective knowledge base of the subspecialty.
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