Experiences of participating in the 100,000 Genomes Project

Credits

Sara Ryan (PhD)

Sara Ryan is a Senior Researcher at Health Experiences Research Group, Department of Primary Health Care, University of Oxford. Sara obtained her PhD from the University of Warwick in 2006. She has a sociological background and her main research interests are disability, difference and social interactions.

Melissa Stepney

Melissa Stepney was one of the principal researchers on this project. She joined the Health Experiences Research Group, Department of Primary Health Care, University of Oxford in 2015. She has a background in social geography with research interests in young people’s health and qualitative methods. Melissa helped conduct the interviews, analyse the data and wrote the topic summaries with Carol Dumelow for this project.

Fauzia Knight (PhD)

Fauzia Knight (PhD) is Senior qualitative researcher at the Health Experiences Research Group. She currently researchers in the area of health experiences alongside running a private therapy practice. In the past she has lectured, researched and published in the areas of legal anthropology and qualitative fieldwork as well as working in various government departments as a researcher and advisor on human rights related issues. She acted as buddy/supervisor and managed delivery in the final stages of the project.

Carol Dumelow (PhD)

Carol Dumelow (PhD) Is a qualitative researcher with over 20 years’ experience of conducting health-related research studies. She has worked on Health Experience Insightsprojects since 2001. She has a Ph.D. in Sociology from the University of Surrey (1998). She wrote 9 of the topic summaries for the project.

Elizabeth Holdsworth

Elizabeth Holdsworth is a Research Fellow in the Policy Innovation Research Unit, based at London School of Hygiene & Tropical Medicine. Her background is in Anthropology, and she is a qualitative researcher. Her research interests centre around the public’s use of health services and their participation in research, and her projects include seeking to understand why people take part in genomic research, and exploring the public's relationship with antibiotics, including their understanding of antimicrobial resistance. She conducted some of the interviews and assisted with recruitment.

Maria Salinas

Maria is a social anthropologist who has worked as a Senior Researcher at The Health Experiences Research Group since 2002. She obtained her D.Phil from the University of Oxford in 2000. Maria helped conduct some of the interviews.

Acknowledgments

We would like to warmly thank all those people who took part in the research and shared their experiences of taking part in the 100,000 Genomes project so enthusiastically.
Thank you to advisory panel members who took the time to give advice and feedback on the Topic Summaries. Special thanks to Jade Howard for writing some of the biographies and checking transcripts, Angela Martin and HERG colleagues for their advice and support.

Advisory Panel:

Prof Nicholas Mays, Director of PIRU, LSHTM
Dr Sian Rees, Director of HEXI, Oxford
Prof Louise Locock, HERG, Oxford (now Aberdeen)
Dr Sara Ryan, HERG, Oxford
Dr Elizabeth Holdsworth, PIRU, LSHTM
Dr Melissa Stepney, HERG, Oxford
Fiona Rennie, NHS England
Michelle Bishop, Health Education England
Tom Fowler, Genomics England
Laura Riley, Genomics England (upto February 2018)
Tom Billins, Genomics England (from February 2018)
Vivienne Parry, Genomics England
Anda Bayliss, RCN
Maggie Wilcox, Independent Cancer Patients’ Voice (ICPV)
Kerrie Montoute, NHS England

Supported by:
Project funded by the Department of Health