Genetic counselor roles in the undiagnosed diseases network research study: Clinical care, collaboration, and curation. Issue 2 (10th August 2021)

• Record Type: Journal Article
• Authors: Kohler, Jennefer N.; Kelley, Emily G.; Boyd, Brenna M.; Sillari, Catherine H.; Marwaha, Shruti; Wheeler, Matthew T.
• Other Names: Acosta Maria T investigator.; Adam Margaret investigator.; Adams David R investigator.; Agrawal Pankaj B investigator.; Alejandro Mercedes E investigator.; Alvey Justin investigator.; Amendola Laura investigator.; Andrews Ashley investigator.; Ashley Euan A investigator.; Azamian Mahshid S investigator.; Bacino Carlos A investigator.; Bademci Guney investigator.; Baker Eva investigator.; Balasubramanyam Ashok investigator.; Baldridge Dustin investigator.; Bale Jim investigator.; Bamshad Michael investigator.; Barbouth Deborah investigator.; Bayrak‐Toydemir Pinar investigator.; Beck Anita investigator.; Beggs Alan H investigator.; Behrens Edward investigator.; Bejerano Gill investigator.; Bennet Jimmy investigator.; Berg‐Rood Beverly investigator.; Bernstein Jonathan A investigator.; Berry Gerard T investigator.; Bican Anna investigator.; Bivona Stephanie investigator.; Blue Elizabeth investigator.; Bohnsack John investigator.; Bonnenmann Carsten investigator.; Bonner Devon investigator.; Botto Lorenzo investigator.; Boyd Brenna investigator.; Briere Lauren C investigator.; Brokamp Elly investigator.; Brown Gabrielle investigator.; Burke Elizabeth A investigator.; Burrage Lindsay C investigator.; Butte Manish J investigator.; Byers Peter investigator.; Byrd William E investigator.; Carey John investigator.; Carrasquillo Olveen investigator.; Chang Ta Chen Peter investigator.; Chanprasert Sirisak investigator.; Chao Hsiao‐Tuan investigator.; Clark Gary D investigator.; Coakley Terra R investigator.; Cobban Laurel A investigator.; Cogan Joy D investigator.; Coggins Matthew investigator.; Sessions Cole F investigator.; Colley Heather A investigator.; Cooper Cynthia M investigator.; Cope Heidi investigator.; Craigen William J investigator.; Crouse Andrew B investigator.; Cunningham Michael investigator.; D'Souza Precilla investigator.; Dai Hongzheng investigator.; Dasari Surendra investigator.; Davis Joie investigator.; Dayal Jyoti G investigator.; Deardorff Matthew investigator.; Dell'Angelica Esteban C investigator.; Dhar Shweta U investigator.; Dipple Katrina investigator.; Doherty Daniel investigator.; Dorrani Naghmeh investigator.; Doss Argenia L investigator.; Douine Emilie D investigator.; Draper David D investigator.; Duncan Laura investigator.; Earl Dawn investigator.; Eckstein David J investigator.; Emrick Lisa T investigator.; Eng Christine M investigator.; Esteves Cecilia investigator.; Falk Marni investigator.; Fernandez Liliana investigator.; Ferreira Carlos investigator.; Fieg Elizabeth L investigator.; Findley Laurie C investigator.; Fisher Paul G investigator.; Fogel Brent L investigator.; Forghani Irman investigator.; Fresard Laure investigator.; Gahl William A investigator.; Glass Ian investigator.; Gochuico Bernadette investigator.; Godfrey Rena A investigator.; Golden‐Grant Katie investigator.; Goldman Alica M investigator.; Goldrich Madison P investigator.; Goldstein David B investigator.; Grajewski Alana investigator.; Groden Catherine A investigator.; Gutierrez Irma investigator.; Hahn Sihoun investigator.; Hamid Rizwan investigator.; Hanchard Neil A investigator.; Hassey Kelly investigator.; Hayes Nichole investigator.; High Frances investigator.; Hing Anne investigator.; Hisama Fuki M investigator.; Holm Ingrid A investigator.; Hom Jason investigator.; Horike‐Pyne Martha investigator.; Huang Alden investigator.; Huang Yong investigator.; Huryn Laryssa investigator.; Isasi Rosario investigator.; Jamal Fariha investigator.; Jarvik Gail P investigator.; Jarvik Jeffrey investigator.; Jayadev Suman investigator.; Karaviti Lefkothea investigator.; Kennedy Jennifer investigator.; Kiley Dana investigator.; Kobren Shilpa N investigator.; Kohane Isaac S investigator.; Kohler Jennefer N investigator.; Krakow Deborah investigator.; Krasnewich Donna M investigator.; Kravets Elijah investigator.; Korrick Susan investigator.; Koziura Mary investigator.; Krier Joel B investigator.; Lalani Seema R investigator.; Lam Byron investigator.; Lam Christina investigator.; LaMoure Grace L investigator.; Lanpher Brendan C investigator.; Lanza Ian R investigator.; Latham Lea investigator.; LeBlanc Kimberly investigator.; Lee Brendan H investigator.; Lee Hane investigator.; Levitt Roy investigator.; Lewis Richard A investigator.; Lincoln Sharyn A investigator.; Liu Pengfei investigator.; Liu Xue Zhong investigator.; Longo Nicola investigator.; Loo Sandra K investigator.; Loscalzo Joseph investigator.; Maas Richard L investigator.; MacDowall John investigator.; Macnamara Ellen F investigator.; MacRae Calum A investigator.; Maduro Valerie V investigator.; Majcherska Marta M investigator.; Mak Bryan C investigator.; Maclidan May Christine V. investigator.; Mamounas Laura A investigator.; Manolio Teri A investigator.; Mao Rong investigator.; Maravilla Kenneth investigator.; Markello Thomas C investigator.; Marom Ronit investigator.; Marth Gabor investigator.; Martin Beth A investigator.; Martin Martin G investigator.; Martínez‐Agosto Julian A investigator.; Marwaha Shruti investigator.; McCauley Jacob investigator.; McConkie‐Rosell Allyn investigator.; McCormack Colleen E investigator.; McCray Alexa T investigator.; McGee Elisabeth investigator.; Mefford Heather investigator.; Lawrence Merritt J investigator.; Might Matthew investigator.; Mirzaa Ghayda investigator.; Morava Eva investigator.; Moretti Paolo M investigator.; Mosbrook‐Davis Deborah investigator.; Mulvihill John J investigator.; Murdock David R investigator.; Nagy Anna investigator.; Nakano‐Okuno Mariko investigator.; Nath Avi investigator.; Nelson Stan F investigator.; Newman John H investigator.; Nicholas Sarah K investigator.; Nickerson Deborah investigator.; Nieves‐Rodriguez Shirley investigator.; Novacic Donna investigator.; Oglesbee Devin investigator.; Orengo James P investigator.; Pace Laura investigator.; Pak Stephen investigator.; Carl Pallais J investigator.; Palmer Christina GS. investigator.; Papp Jeanette C investigator.; Parker Neil H investigator.; Phillips John A investigator.; Posey Jennifer E investigator.; Potocki Lorraine investigator.; Power Bradley investigator.; Pusey Barbara N investigator.; Quinlan Aaron investigator.; Raskind Wendy investigator.; Raja Archana N investigator.; Rao Deepak A investigator.; Renteria Genecee investigator.; Reuter Chloe M investigator.; Rives Lynette investigator.; Robertson Amy K investigator.; Rodan Lance H investigator.; Rosenfeld Jill A investigator.; Rosenwasser Natalie investigator.; Rossignol Francis investigator.; Ruzhnikov Maura investigator.; Sacco Ralph investigator.; Sampson Jacinda B investigator.; Samson Susan L investigator.; Saporta Mario investigator.; Ron Scott C investigator.; Schaechter Judy investigator.; Schedl Timothy investigator.; Schoch Kelly investigator.; Scott Daryl A investigator.; Shashi Vandana investigator.; Shin Jimann investigator.; Signer Rebecca investigator.; Silverman Edwin K investigator.; Sinsheimer Janet S investigator.; Sisco Kathy investigator.; Smith Edward C investigator.; Smith Kevin S investigator.; Solem Emily investigator.; Solnica‐Krezel Lilianna investigator.; Solomon Ben investigator.; Spillmann Rebecca C investigator.; Stoler Joan M investigator.; Sullivan Jennifer A investigator.; Sullivan Kathleen investigator.; Sun Angela investigator.; Sutton Shirley investigator.; Sweetser David A investigator.; Sybert Virginia investigator.; Tabor Holly K investigator.; Tan Amelia L. M investigator.; Tan Queenie K.‐G. investigator.; Tekin Mustafa investigator.; Telischi Fred investigator.; Thorson Willa investigator.; Thurm Audrey investigator.; Tifft Cynthia J investigator.; Toro Camilo investigator.; Tran Alyssa A investigator.; Tucker Brianna M investigator.; Urv Tiina K investigator.; Vanderver Adeline investigator.; Velinder Matt investigator.; Viskochil Dave investigator.; Vogel Tiphanie P investigator.; Wahl Colleen E investigator.; Wallace Stephanie investigator.; Walley Nicole M investigator.; Walsh Chris A investigator.; Walker Melissa investigator.; Wambach Jennifer investigator.; Wan Jijun investigator.; Wang Lee‐kai investigator.; Wangler Michael F investigator.; Ward Patricia A investigator.; Wegner Daniel investigator.; Wener Mark investigator.; Wenger Tara investigator.; Perry Katherine Wesseling investigator.; Westerfield Monte investigator.; Wheeler Matthew T investigator.; Whitlock Jordan investigator.; Wolfe Lynne A investigator.; Woods Jeremy D investigator.; Yamamoto Shinya investigator.; Yang John investigator.; Yousef Muhammad investigator.; Zastrow Diane B investigator.; Zein Wadih investigator.; Zhao Chunli investigator.; Zuchner Stephan investigator.;
• Is Part Of: Journal of genetic counseling. Volume 31:Issue 2(2022)
• Page Start: 326
• Page End: 337
• Publication Date: 2021-08-10
• Subjects: expanded roles -- Genetic counseling -- genetic counselors -- professional development -- research; Genetic counseling -- Periodicals; 616.042
• DOI: 10.1002/jgc4.1493
• Languages: English
• ISSNs: 1059-7700

Abstract

Abstract: Genetic counselors (GCs) are increasingly filling important positions on research study teams, but there is limited literature describing the roles of GCs in these settings. GCs on the Undiagnosed Diseases Network (UDN) study team serve in a variety of roles across the research network and provide an opportunity to better understand genetic counselor roles in research. To quantitatively characterize the tasks regularly performed and professional fulfillment derived from these tasks, two surveys were administered to UDN GCs in a stepwise fashion. Responses from the first, free‐response survey elicited the scope of tasks which informed development of a second structured, multiple‐select survey. In survey 2, respondents were asked to select which roles they performed. Across 19 respondents, roles in survey 2 received a total of 947 selections averaging approximately 10 selections per role. When asked to indicate what roles they performed, respondent selected a mean of 50 roles (range 22–70). Survey 2 data were analyzed via thematic coding of responses and hierarchical cluster analysis to identify patterns in responses. From the thematic analysis, 20 non‐overlapping codes emerged in seven categories: clinical interaction and care, communication, curation, leadership, participant management, research, and team management. Three themes emerged from the categories that represented the roles of GCs in the UDN: clinical care, collaboration, and curation. Cluster analyses showed that responses were more similar among individuals at the same institution than between institutions. This study highlights the ways GCs apply their unique skill set in the context of a clinical translational research network. Additionally, findings from this study reinforce the wide applicability of core skills that are part of genetic counseling training. Clinical literacy, genomics expertise and analysis, interpersonal, psychosocial and counseling skills, education, professional practice skills, and an understanding of research processes make genetic counselors well suited for such roles and poised to positively impact research experiences and outcomes for participants.