Genetic testing for the risk of developing late effects among survivors of childhood cancer: Consumer understanding, acceptance, and willingness to pay.
Genetic testing to determine cancer survivors' risk of developing late effects from their cancer treatment will be increasingly used in survivorship care. This 2-stage study with 64 survivors of childhood cancer and their parents investigated the preferences and acceptability of testing among those who may be at risk of developing late effects.



The first stage (Stage 1) identified the most commonly perceived benefits and concerns regarding genetic testing for the risk of late effects among 24 participants. In Stage 2, during interviews, 20 survivors (55% of whom were female; mean age, 26.0 years [range, 18-39 years]; standard deviation [SD], 0.80) and 20 parents (55% of whom were male; mean age of child survivor, 14.2 years [range, 10-19 years]; SD, 0.79) rated the 7 most common benefits and concerns from those identified in Stage 1. Interviews were transcribed verbatim and analyzed. Decisional balance ratios were calculated by dividing the participants' average concerns scores with the average benefits scores.



Genetic testing for late effects was highly acceptable: 95% of participants leaned toward testing, and the majority (65.9%) would pay up to Australian $5000. The majority (97.2%) reported it was acceptable to wait for up to 6 months to receive results, and to be offered testing immediately after treatment or when the survivor reached adulthood (62.9%). Survivors and parents had a highly positive decisional balance (Mean (M), 0.5 [SD, 0.38] and M, 0.5 [SD, 0.39], respectively), indicating that perceived benefits outweighed concerns.



Although to our knowledge clinical efficacy has yet to be clearly demonstrated, survivors and parents described positive interest in genetic testing for the risk of developing late effects. Perceived benefits outweighed harms, and the majority of participants would be willing to pay, and wait, for testing. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2876-2885. © 2016 American Cancer Society.
Discipline of Paediatrics, School of Women's and Children's Health, University of New South Wales Medicine, University of New South Wales, Sydney, New South Wales, Australia.|Behavioral Sciences Unit proudly supported by the Kids with Cancer Foundation, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.
Gabrielle
G
Georgiou
Discipline of Paediatrics, School of Women's and Children's Health, University of New South Wales Medicine, University of New South Wales, Sydney, New South Wales, Australia.|Behavioral Sciences Unit proudly supported by the Kids with Cancer Foundation, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.
Claire E
CE
Wakefield
Discipline of Paediatrics, School of Women's and Children's Health, University of New South Wales Medicine, University of New South Wales, Sydney, New South Wales, Australia.|Behavioral Sciences Unit proudly supported by the Kids with Cancer Foundation, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.
Brittany C
BC
McGill
Discipline of Paediatrics, School of Women's and Children's Health, University of New South Wales Medicine, University of New South Wales, Sydney, New South Wales, Australia.|Behavioral Sciences Unit proudly supported by the Kids with Cancer Foundation, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.
Joanna E
JE
Fardell
Discipline of Paediatrics, School of Women's and Children's Health, University of New South Wales Medicine, University of New South Wales, Sydney, New South Wales, Australia.|Behavioral Sciences Unit proudly supported by the Kids with Cancer Foundation, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.
Christina
C
Signorelli
Discipline of Paediatrics, School of Women's and Children's Health, University of New South Wales Medicine, University of New South Wales, Sydney, New South Wales, Australia.|Behavioral Sciences Unit proudly supported by the Kids with Cancer Foundation, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.
Lucy
0000-0002-8648-6165
L
Hanlon
Hereditary Cancer Clinic, Department of Medical Oncology, Prince of Wales Hospital, Randwick, New South Wales, Australia.|Prince of Wales Clinical School, University of New South Wales, Sydney, New South Wales, Australia.
Kathy
K
Tucker
Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts.|Department of Psychiatry, Harvard Medical School, Boston, Massachusetts.
Andrea F
AF
Patenaude
Discipline of Paediatrics, School of Women's and Children's Health, University of New South Wales Medicine, University of New South Wales, Sydney, New South Wales, Australia.|Behavioral Sciences Unit proudly supported by the Kids with Cancer Foundation, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.
Richard J
RJ
Cohn
D000293:Adolescent; D000328:Adult; D005260:Female; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000191:economics* / Q000379:methods*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000191:economics* / Q000235:genetics* / Q000401:mortality / Q000523:psychology; D010342:Patient Acceptance of Health Care; D012306:Risk; D017741:Survivors; D055815:Young Adult
attitudes; cancer; decision making; genetic testing; oncology; pediatrics; personalized medicine; understanding