BACKGROUND: During the process of tumor profiling, there is the potential to detect germline variants. To the authors' knowledge, there currently is no accepted standard of care for how to deal with these incidental findings. The goal of the current study was to assess disclosure preferences among patients with cancer regarding incidental genomic variants that may be discovered during tumor profiling. METHODS: A 45-item questionnaire was administered to 413 patients in ambulatory oncology clinics. The survey captured demographic and disease variables and personal and family history, and presented case scenarios for different types of incidental germline variants that could theoretically be detected during genomic analysis of a patient's tumor. RESULTS: The possibility of discovering non-cancer-related, germline variants did not deter patients from tumor profiling: 77% wanted to be informed concerning variants that could increase their risk of a serious but preventable illness, 56% wanted to know about variants that cause a serious but unpreventable illness, and 49% wanted to know about variants of uncertain significance. The majority of patients (75%) indicated they would share hereditary information regarding predisposition to preventable diseases with family and 62% would share information concerning unpreventable diseases. The most frequent concerns about incidental findings were ability to obtain health (48%) or life (41%) insurance. Only 21% of patients were concerned about privacy of information. CONCLUSIONS: Patients with cancer appear to prefer to receive information regarding incidental germline variants, but there is substantial variability with regard to what information patients wish to learn. The authors recommend that personal preferences for the disclosure of different types of incidental findings be clarified before a tumor profiling test is ordered. Cancer 2016;122:1588-97.
BACKGROUND: During the process of tumor profiling, there is the potential to detect germline variants. To the authors' knowledge, there currently is no accepted standard of care for how to deal with these incidental findings. The goal of the current study was to assess disclosure preferences among patients with cancer regarding incidental genomic variants that may be discovered during tumor profiling. METHODS: A 45-item questionnaire was administered to 413 patients in ambulatory oncology clinics. The survey captured demographic and disease variables and personal and family history, and presented case scenarios for different types of incidental germline variants that could theoretically be detected during genomic analysis of a patient's tumor. RESULTS: The possibility of discovering non-cancer-related, germline variants did not deter patients from tumor profiling: 77% wanted to be informed concerning variants that could increase their risk of a serious but preventable illness, 56% wanted to know about variants that cause a serious but unpreventable illness, and 49% wanted to know about variants of uncertain significance. The majority of patients (75%) indicated they would share hereditary information regarding predisposition to preventable diseases with family and 62% would share information concerning unpreventable diseases. The most frequent concerns about incidental findings were ability to obtain health (48%) or life (41%) insurance. Only 21% of patients were concerned about privacy of information. CONCLUSIONS:Patients with cancer appear to prefer to receive information regarding incidental germline variants, but there is substantial variability with regard to what information patients wish to learn. The authors recommend that personal preferences for the disclosure of different types of incidental findings be clarified before a tumor profiling test is ordered. Cancer 2016;122:1588-97.
Authors: Jada G Hamilton; Elyse Shuk; Margaux C Genoff; Vivian M Rodríguez; Jennifer L Hay; Kenneth Offit; Mark E Robson Journal: J Oncol Pract Date: 2017-06-19 Impact factor: 3.840
Authors: Michael W Drazer; Sabah Kadri; Madina Sukhanova; Sushant A Patil; Allison H West; Simone Feurstein; Dalein A Calderon; Matthew F Jones; Caroline M Weipert; Christopher K Daugherty; Adrián A Ceballos-López; Gordana Raca; Mark W Lingen; Zejuan Li; Jeremy P Segal; Jane E Churpek; Lucy A Godley Journal: Blood Adv Date: 2018-01-23
Authors: David Bick; Pamela C Fraser; Michael F Gutzeit; Jeremy M Harris; Tina M Hambuch; Daniel C Helbling; Howard J Jacob; Juliet N Kersten; Steven R Leuthner; Thomas May; Paula E North; Sasha Z Prisco; Bryce A Schuler; Mary Shimoyama; Kimberly A Strong; Scott K Van Why; Regan Veith; James Verbsky; Arthur M Weborg; Brandon M Wilk; Rodney E Willoughby; Elizabeth A Worthey; David P Dimmock Journal: J Pediatr Genet Date: 2016-11-28
Authors: Kristin Clift; Sarah Macklin; Colin Halverson; Jennifer B McCormick; Abd Moain Abu Dabrh; Stephanie Hines Journal: J Community Genet Date: 2019-08-20
Authors: Julia Wynn; Josue Martinez; Jessica Bulafka; Jimmy Duong; Yuan Zhang; Codruta Chiuzan; Jain Preti; Maria L Cremona; Vaidehi Jobanputra; Abby J Fyer; Robert L Klitzman; Paul S Appelbaum; Wendy K Chung Journal: J Genet Couns Date: 2017-11-22 Impact factor: 2.537
Authors: Jada G Hamilton; Elyse Shuk; Margaux Genoff Garzon; Vivian M Rodríguez; Joy Westerman; Jennifer L Hay; Kenneth Offit; Mark E Robson Journal: JCO Precis Oncol Date: 2017-12-21
Authors: Neda Stjepanovic; Tracy L Stockley; Philippe L Bedard; Jeanna M McCuaig; Melyssa Aronson; Spring Holter; Kara Semotiuk; Natasha B Leighl; Raymond Jang; Monika K Krzyzanowska; Amit M Oza; Abha Gupta; Christine Elser; Lailah Ahmed; Lisa Wang; Suzanne Kamel-Reid; Lillian L Siu; Raymond H Kim Journal: BMC Med Genomics Date: 2018-08-09 Impact factor: 3.063
Authors: Grace Davies; Phyllis Butow; Christine E Napier; Nicci Bartley; Ilona Juraskova; Bettina Meiser; Mandy L Ballinger; David M Thomas; Timothy E Schlub; Megan C Best Journal: Transl Oncol Date: 2020-05-22 Impact factor: 4.243