Article
Quality of life drives patients' preferences for secondary findings from genomic sequencing.
European journal of human genetics : EJHG - 1 Sept 2020
Mighton Chloe, Carlsson Lindsay, Clausen Marc, Casalino Selina, Shickh Salma, McCuaig Laura, Joshi Esha, Panchal Seema, Semotiuk Kara, Ott Karen, Elser Christine, Eisen Andrea, Kim Raymond H, Lerner-Ellis Jordan, Carroll June C, Glogowski Emily, Schrader Kasmintan, Bombard Yvonne
Abstract excerpt
There is growing impetus to include measures of personal utility, the nonmedical value of information, in addition to clinical utility in health technology assessment (HTA) of genomic tests such as genomic sequencing (GS). However, personal utility and clinical utility are challenging to define and measure. This study aimed to explore what drives patients' preferences for hypothetically learning medically...
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