DNA sequencing in oncology: a focus group study on a duty to recontact.

Abstract

Introduction: Particularly in genetics, former results can gain new meaning in the course of time. This raises questions about when professionals should recontact patients with new information. The aim of this focus group study is to clarify how different stakeholders in oncology think about the extent and limits of a duty to recontact.

Materials and methods: One focus group with oncology patients (n = 12) and two groups with healthcare professionals (total n = 13) were conducted. In general, there was support for recontacting patients. The scope and extent of this duty was, however, perceived differently. Differences and similarities on the following six contextual factors are discussed: information features, costs and efforts, personal preferences, who is contacted, clinic or research setting, and time.

Discussion: Oncology patients were clear in their wish to receive updates while the professionals were more hesitant to consider recontact as a standard of care. This is not surprising as recontacting patients with new information would mean a shift from a patient-initiated approach toward an information-initiated approach. This entails a different way of offering healthcare. Furthermore, the question is not only what professionals' responsibilities are, but how to design a system that complies with patients' wishes to receive updates.