Cancer patients' intentions towards receiving unsolicited genetic information obtained using next-generation sequencing.

Bijlsma RM1, Wessels H2, Wouters RHP3, May AM4, Ausems MGEM5, Voest EE6, Bredenoord AL3.

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Abstract

Next-generation sequencing (NGS) can be used to generate information about a patient's tumour and personal genome. This powerful diagnostic tool provides solicited and unsolicited hereditary genetic (risk) information that could have consequences for cancer patients and their quality of life. A well-defined approach for returning appropriate genetic risk information is needed in personalized cancer care. A qualitative design with semi-structured interviews was used. We conducted interviews with 24 Dutch patients with different types of cancer, both NGS-experienced and NGS-inexperienced, to learn their intentions, needs and preferences towards receiving unsolicited geneticinformation obtained using NGS. Almost all participants had a positive attitude towards receiving unsolicited findings. After receiving comprehensive background information on NGS, including a binning model of four categories of unsolicited findings, most participants preferred to receive only subsets of genetic information. Their main concern was their own and others' (including family members) ability to cope with (the increased risk of having) a genetic disorder. Providing background information gave cancer patients the opportunity to select subsets of findings and increased their ability to make an informed choice. Special attention is needed for social and emotional factors to support the patients themselves and when communicating test results with their family members.

KEYWORDS:

Cancer patients’ intentions; Ethics; Genetics; Incidental finding; Needs and preferences; Next-generation DNA sequencing; Theory of planned behaviour; Unsolicited finding