Helpline 07939 046 030

Participant Experiences of the 100,000 Genomes Project

18 July 2019

Participant Experiences of the 100,000 Genomes Project

As a member of Genetic Alliance, Nerve Tumours UK welcomes their latest research and survey results

Genomics England commissioned Genetic Alliance UK to seek the views of patients and carers around the introduction of Whole Genome Sequencing into the NHS. They also wanted to hear about people’s experiences of taking part in the 100,000 Genomes Project ( A project that sequenced 100,000 genomes from around 85,000 people. Participants were NHS patients with a rare disease, plus their families, and patients with cancer).

Here are some of the key findings: 

1. The majority of our respondents were glad they had taken part in the 100,000 Genomes Project:

(73%), would take part again (86%), and would be likely to participate in future medical and genomic research.

2. However, fewer than half (43%) of our respondents said they were ‘satisfied’ or ‘very satisfied’ with their overall experience of taking part in the 100,000 Genomes Project. Respondents indicated that the benefits they hoped for from taking part were not matched by actual benefits achieved at the time of the survey.

3. Most respondents (77%) had yet to receive a result at the time of our survey, which offers a likely explanation for the discrepancy between findings 1 and 2.

4. Over 80% of patients and carers felt they had been provided with sufficient, comprehensible information about the 100,000 Genomes Project before taking part. However they would have liked more information about what to expect during the process, and more regular contact while waiting for a result.

 

If you would like to find out about the full results of the study you can do so by clicking on the link below:

Filter News

Filter by Date
Category
Reset

Study - Resilient Youth with NF

Online Harvard Study for 12-17 year olds

Read More

Owen’s Ball 2021

The Owen Family held their annual black tie fundraiser for NTUK

Read More

Graham’s Super Nine Shines A Light on NF

Graham's 7 year old great-nephew Nathan is his inspiration for his epic challenges to fundraise for NTUK

Read More

Alice’s NF2 study project

Alice describes her NF2 study project as part of her Genetic and Genomic Counselling MSc

Read More

Meet Siobhan, our new Specialist Advisor for Northern Ireland

Meet Siobhan from Northern Ireland, our newest Specialist Advisor

Read More

Poppy’s NF1 story

Poppy describes growing up with NF1 and fundraising for future research & treatment

Read More

Meeting Alpha FX

NTUK Head Office visited Alpha FX to give a presentation on our work & how their support & donations help the NF Community

Read More

Nerve Tumours UK joins the Neurological Alliance

A coalition of over 70 organisations working together to transform quality of life for people with neurological conditions.

Read More

Nerve Tumours UK Conference 2021

The first meeting since 2019 with our Specialist NF Advisors & Nurses, Head Office & Members of the Board of Trustees

Read More