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/Recruit_advert_Family_Planning_and_decision_making_370x280_800_600_s_c1.jpg)
CAR research family planning decision making
This CAR UWE research explores family planning & decision making for people with a visible difference which can be inherited
Read More![](https://nervetumours.org.uk/images/made/images/common/National_Theatre_RR_(4)_skyline_370x280_800_600_s_c1.jpg)
Shine A Light 2024
The Shine A Light 2024 campaign had 133 buildings around the UK & the Republic of Ireland lit up in blue!
Read More![](https://nervetumours.org.uk/images/made/images/common/Juliette_Buttimore_370x280_800_600_s_c1.jpg)
Guidance on sudden hearing loss in NF2-related Schwannomatosis (NF2-SWN)
Symptoms, diagnosis & treatment of sudden hearing loss, from Juliette Buttimore, Nurse Practitioner NF2 Service Addenbrooke's
Read More![](https://nervetumours.org.uk/images/made/images/common/Emily_Owen_370x280_1_800_600_s_c1.jpg)
NF2 Day 2024 by Emily Owen
A reflective poem for World NF2 Day, to celebrate people living with NF2
Read More![](https://nervetumours.org.uk/images/made/images/common/NTUK_21358_Thomas_Young_Campaign_Web_Banner_650x992_73_dpi__370x280_800_600_s_c1.jpg)
Everybody is born a Champion
NTUK & RBH's 3rd campaign features GB Paralympian Thomas Young, who has NF1, and celebrates those living with NF
Read More![](https://nervetumours.org.uk/images/made/images/common/Connor_1_370x280_800_600_s_c1.jpg)
Connor’s NF2 story
Connor's mum Tracy's maternal instincts proved invaluable when fighting to get Connor's symptoms investigated
Read More![](https://nervetumours.org.uk/images/made/images/common/20240504_142236_370x280_800_600_s_c1.jpg)
Jo’s Shine A Light Family Fun Day
The family fundraiser was supported by Dr Shruti Garg, member of the Nerve Tumours UK Medical Advisory Board
Read More![](https://nervetumours.org.uk/images/made/images/common/GMcr4r_W8AAaGZd_370x280_800_600_s_c1.jpg)
Erin’s 24 hour charity live stream
Erin has NF1 and is raising awareness with a 24 hour live charity stream to Shine A Light on NF
Read More![](https://nervetumours.org.uk/images/made/images/common/image1_(17)_370x280_800_600_s_c1.jpg)
Tate’s Shine A Light Bikeathon
Tate's 4th NTUK fundraiser was a Shine A Light Bikeathon, having learnt to cycle in just 3 weeks!
Read More