Abstract
Traditionally, the biotechnology and pharmaceutical industry (BPI) has focused drug development at the mass-market level targeting common medical issues. However, a recent trend is the development of therapies for orphan or rare disorders, including many genetic disorders. Developing treatments for genetic disorders requires an understanding of the needs of the community and translating genomic information to clinical and non-clinical audiences. The core skills of genetic counselors (GCs) include a deep knowledge of genetics and ability to communicate complex information to a broad audience, making GCs a choice fit for this shift in drug development. To date there is limited data defining the roles GCs hold within this industry. This exploratory study aimed to define the roles and motivation of GCs working in BPI, assess job satisfaction, and identify translatable skills and current gaps in GC training programs. The authors surveyed 26 GCs working in BPI in the United States; 79 % work for companies focused on rare disorders. GC positions in BPI are growing, with 57 % of respondents being the first GC in their role. GCs in BPI continue to utilize core genetic counseling competencies, though 72 % felt their training did not fully prepare them for BPI. These data suggest opportunities for exposure to BPI in GC training to better prepare future generations of GCs for these career opportunities. GC satisfaction was high in BPI, notably in areas traditionally reported as less satisfying on the National Society for Genetic Counselors Professional Status Survey: salary and advancement opportunities. BPI’s growing interest in rare disorders represents a career opportunity for GCs, addressing both historic areas of dissatisfaction for GCs and BPI’s genomic communication needs.
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Acknowledgments
The authors would like to acknowledge Ken Huttner for his editorial guidance and insight, Kim Carlson for her statistics wisdom and expertise, as well as Shannon Barrett, Lori Ann Correia, Amy Fisher, Liz Horn, Carrie Milliard, and Kim Mooney for their assistance with survey design and recruitment.
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Tessa Field is a past employee and stockowner of Edimer Pharmaceuticals. She is currently self-employed by Field Bio Consulting, consulting for various biotechnology companies. Her employment in the biotechnology industry therefore presents a threat to the validity of these data due to researcher bias. Every effort was made to control this bias: the co-principal investigator and two additional authors do not work in BPI, and strategic decisions and data were interpreted with multiple points of view the majority of which do not represent individuals who work in BPI.
Stephanie Jo Brewster, Meghan Towne, and MaryAnn W. Campion declare that they have no conflict of interest.
Human Studies and Informed Consent
This study has institutional Review Board approval obtained from Boston University School of Medicine (protocol H-32,572). All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.
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This article does not contain any studies with animals performed by any of the authors.
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Field, T., Brewster, S.J., Towne, M. et al. Emerging Genetic Counselor Roles within the Biotechnology and Pharmaceutical Industries: as Industry Interest Grows in Rare Genetic Disorders, How are Genetic Counselors Joining the Discussion?. J Genet Counsel 25, 708–719 (2016). https://doi.org/10.1007/s10897-016-9946-9
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DOI: https://doi.org/10.1007/s10897-016-9946-9