Cancer patients\u2019 intentions towards receiving unsolicited genetic information obtained using next-generation sequencing

Rhodé M Bijlsma,Hester Wessels,Annelien L Bredenoord,Anne M May,Margreet G E M Ausems,Emile E Voest,Roel H P Wouters

doi:10.1007/s10689-017-0033-7

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 genetic information 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.

Highlights

Today, systemic cancer treatment decisions are based on the tissue of origin, and increasingly on genetic information
We adapted the surveys used in the ClinSeq study [11, 20] and added questions concerning, for instance, perceived behavioural control and questions about patient needs and preferences regarding education and counselling when learning the results of Next-generation sequencing (NGS)
Consistent with the literature [3, 10, 11, 13], the attitude of most of our participants, both curable- and advanced-stage, NGS-experienced and NGSinexperienced cancer patients, was positive towards receiving genetic information from NGS performed during cancer diagnosis

Summary

Introduction

Systemic cancer treatment decisions are based on the tissue of origin, and increasingly on genetic information. Next-generation sequencing (NGS) technologies enable the affordable sequencing of whole genomes within a short timeframe. This powerful diagnostic tool can be used to generate solicited and unsolicited hereditary genetic (risk) information that could have medical, psychological, financial and social consequences for patients and a considerable impact on their quality of life [1, 2]. A well-defined approach for returning genetic risk information to cancer patients and their family members is needed. We [3,4,5] and others [6, 7] have developed disclosure policies for the feedback of genetic information in the context

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Results

Conclusion