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
![](https://nervetumours.org.uk/images/made/images/common/834872_1052_00091_370x280_800_600_s_c1.jpg)
Stuart’s Schwannoma Story Part One
Stuart describes how certain symptoms led to a Schwannoma discovery
Read More![](https://nervetumours.org.uk/images/made/images/common/image1_370x280_800_600_s_c1.jpg)
Joy’s NF1 story
Joy describes living with NF1; her son's diagnosis and support at school; fundraising and shining a light on NF
Read More![](https://nervetumours.org.uk/images/made/images/common/1_Onno_Faber_at_a_meeting_this_summer_to_organize_his_hackathon_OF_370x280_800_600_s_c1.jpg)
A man on a mission: Onno Faber and his NF2 journey
Onno Faber - since NF2 diagnosis aged 33, Onno is a man on a mission. Article courtesy of NEO.LIFE
Read More![](https://nervetumours.org.uk/images/made/images/common/Kate_Duncan_370x280_800_600_s_c1.jpg)
Kate’s NF1 Story & DanceAthon
Kate describes her son's NF1 journey and how NTUK supported them
Read More![](https://nervetumours.org.uk/images/made/images/common/all_runners_collage_370x280_800_600_s_c1.jpg)
Strictly Come Running: London Marathon Class of 2021
Congratulations to our class of 2021 London Marathon runners
Read More![](https://nervetumours.org.uk/images/made/images/common/NF2_meeting_2021_collage_370x280_800_600_s_c1.jpg)
Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the 2021 NHS England NF2 meeting
Read more about the England NF2 meeting - working together to improve the experience of NF2 patients
Read More![](https://nervetumours.org.uk/images/made/images/common/DT_2_370x280_800_600_s_c1.jpg)
Douglas Thomson’s NF1 Story
Douglas describes life with NF1 and how losing his leg was one of the best things to happen to him
Read More![](https://nervetumours.org.uk/images/made/images/common/wing_walk_promo2_370x280_800_600_s_c1.jpg)
Tricia’s Wingwalk and Birthday Fundraiser for Sarah and Keith
Tricia's fundraising wingwalk in memory of her daughter Sarah who had NF1, and to remember her father Keith
Read More