The University of Southampton
University of Southampton Institutional Repository
Warning ePrints Soton is experiencing an issue with some file downloads not being available. We are working hard to fix this. Please bear with us.

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

Fostering trust in healthcare: participants’ experiences, views, and concerns about the 100,000 genomes project
Fostering trust in healthcare: participants’ experiences, views, and concerns about the 100,000 genomes project
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) about 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. We found that interviewees' decisions to participate in the 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 its current funding and staffing constraints) within the newly formed NHS Genomic Medicine Service.
1769-7212
Dheensa, Sandeep
d7d7e2bb-8def-4fad-9e1d-33d8141a0c9c
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Fenwick, Angela
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31
Dheensa, Sandeep
d7d7e2bb-8def-4fad-9e1d-33d8141a0c9c
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Fenwick, Angela
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31

Dheensa, Sandeep, Lucassen, Anneke and Fenwick, Angela (2018) Fostering trust in healthcare: participants’ experiences, views, and concerns about the 100,000 genomes project. European Journal of Medical Genetics. (doi:10.1016/j.ejmg.2018.11.024).

Record type: Article

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) about 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. We found that interviewees' decisions to participate in the 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 its current funding and staffing constraints) within the newly formed NHS Genomic Medicine Service.

Text
Fostering trust in healthcare participants’ experiences, views, and concerns about the 100,000 genomes project - Accepted Manuscript
Download (50kB)

More information

Accepted/In Press date: 22 November 2018
e-pub ahead of print date: 29 November 2018

Identifiers

Local EPrints ID: 426744
URI: http://eprints.soton.ac.uk/id/eprint/426744
ISSN: 1769-7212
PURE UUID: 9e8c35a7-00e9-4f29-91d7-f04a0da1e3e4
ORCID for Anneke Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

Catalogue record

Date deposited: 11 Dec 2018 17:30
Last modified: 26 Nov 2021 06:01

Export record

Altmetrics

Contributors

Author: Sandeep Dheensa
Author: Anneke Lucassen ORCID iD
Author: Angela Fenwick

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×