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Knowing, relationships and trust—citizens’ perceptions of whole genome sequencing for the Genetics Clinic of the Future

Abstract

The objective of this article is to present various views from different groups of citizens on the topic of whole genome sequencing (WGS). Sixteen focus groups were carried out in Italy and Austria which aimed at reflecting on the question of how to ensure that the implementation of WGS into the clinic is relevant and responsive to the needs of all members of society. In the qualitative analysis of the focus groups, three key themes (knowing, relationships and trust) were investigated. Although the majority of the participants favoured a person-centred care approach, we also found more radical perspectives in the relationship theme. This includes a self-centred orientation in which health care institutions should be prepared to integrate self-interpretation efforts of citizens and develop strategies to deal with them. Different attitudes towards getting to know genetic information (knowing) and varied approaches to decision-making for or against the use of WGS were observed. Personal capacities, in particular those to handle medical information, were emphasized as key factors. This means that it is important not to connect the desire not to know with a rejection of the technology per se but rather to support information and consultancy processes that effectively involve citizens. Concerning the third theme, we have underlined the important role of mistrust in addition to trust because it mostly points to areas or conditions considered problematic. Thus, mistrust is also a way to articulate critique, for example, of the profit-making with patient data, that has to be taken seriously by governance.

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Notes

  1. 1.

    Borzekowski et al. (2014) investigated the so-called Angelina Effect on the public.

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Acknowledgements

We thank Andrea Lorenzet, Federico Neresini and Claudia Schwarz-Plaschg who provided insights and experience in the design phase of this study and during the fieldwork. We would also like to thank Andrea Petschnig for her support concerning the organizational matters of the project and all colleagues involved in the GCOF project, in particular Terry Vrijenhoek for shaping and coordinating the GCOF project.

Special thanks to all citizens who participated in the GCOF project.

Funding

The Genetics Clinic of the Future project was funded by the European Union’s Horizon 2020 research and innovation programme under grant agreement no. 643439. The work on this paper was supported by the Austrian Federal Ministry of Education, Science and Research (bmbwf-10240/0007-V/3c/2018).

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Correspondence to Simone Schumann.

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No ethics approval was necessary for our study since we were not working with sensitive or patient-related data. All project activities were carried out in compliance with ethical principles as set out, for instance, in the European Code of Conduct for Research Integrity. Participants of the focus groups signed an informed consent form for being included in the study and a confirmed consent form for publication as part of the study consent form.

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Informed consent was obtained from all individual participants included in the study.

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Schumann, S., Gschmeidler, B. & Pellegrini, G. Knowing, relationships and trust—citizens’ perceptions of whole genome sequencing for the Genetics Clinic of the Future. J Community Genet 12, 67–80 (2021). https://doi.org/10.1007/s12687-020-00486-0

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Keywords

  • Whole genome sequencing
  • Public engagement
  • Focus groups
  • Public perceptions