Fostering trust in healthcare: Participants' experiences, views, and concerns about the 100,000 genomes project

Sandi Dheensa, Anneke Lucassen, Angela Fenwick

Research output: Contribution to journalArticle (Academic Journal)peer-review

Abstract

In this paper, we present findings from a project involving 20 patients with rare diseases, or parents thereof, participating in the 100,000 genomes project (100 kG P). We explored their experiences of, and views about, the project, including why they took part, and their hopes and concerns about the future of genomic medicine. Patients who attended genetic clinics for testing were offered the opportunity to undergo the more extensive whole genome sequencing (WGS) if they agreed to take part in the 100 kG P. Once people had agreed, a specific additional appointment was organised for them. Taking part in the project therefore involved additional travel and appointments ('clinical labour'). We found that interviewees' decisions to participate in 100 kG P were based on interpersonal and institutional trust in the NHS, and on an investment in improving care for the future. Interviewees relied upon receiving good ongoing NHS care for managing their own or their child's rare disease, but they worried about what their relationships with NHS healthcare professionals would be like in future. A few participants worried about whether Genomics England's biorepository would remain protected and an asset of the NHS. To honour and foster participants' trust - which may easily be lost - and their clinical labour, we therefore recommend ongoing public engagement and consultation about how genomics is being integrated more widely across specialties (especially given current funding and staffing constraints in the NHS) within the newly formed NHS Genomic Medicine Service.

Original languageEnglish
Pages (from-to)335-341
Number of pages7
JournalEuropean Journal of Medical Genetics
Volume62
Issue number5
Early online date29 Nov 2018
DOIs
Publication statusPublished - May 2019

Bibliographical note

Copyright © 2018. Published by Elsevier Masson SAS.

Keywords

  • Genetics, Medical/ethics
  • Health Knowledge, Attitudes, Practice
  • Humans
  • Rare Diseases/genetics
  • Trust
  • United Kingdom
  • Whole Genome Sequencing

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