Dr Richard Milne

Head of Research and Dialogue, Wellcome Connecting Science
Deputy Director, Kavli Centre for Ethics, Science and the Public

Contact information

Biography

Richard is a social scientist whose work addresses social and ethical challenges associated with new technologies, primarily in the domains of genomics and and the development of data-driven medicine. He is based in the Engagement and Society Group at Wellcome Connecting Science and at the Kavli Centre for Ethics, Science, and the Public in the Faculty of Education.

Richard received his PhD in Science and Technology Studies, based in the interdisciplinary Institute of Human Genetics and Health at University College London. His first degree is in Human Sciences, also from UCL, and he has a MSc in Science and Technology Policy from the Science Policy Research Unit (SPRU) at the University of Sussex. He has held teaching posts at UCL, the University of Sheffield and Birkbeck University of London.

Research interests

My sociological research examines the ethical and social implications of the development of data driven approaches to biomedical research.

Keywords

Data sharing, Ethics, Social science

Publications

Milne, R., Sheehan M, Barnes B, Kapper J, Lea N, N’dow J, Singh G, Martín-Uranga A, Hughes N (in press) “A concentric circles view of health data relations facilitates understanding of sociotechnical challenges for learning health systems and the role of federated data networks” Frontiers in Big Data
Milne, R., Morley, K.I., Almarri, M.A. et al. (2022) “Return of genomic results does not motivate intent to participate in research for all: perspectives across 22 countries” Genetics in Medicine
Milne, R., Costa, A. and Brenman, N. (2022) “Digital phenotyping and the (data) shadow of Alzheimer’s disease” Big Data and Society
Milne, R. and Patch, C. (2022) “Ethical challenges associated with pathogen and host genetics in infectious disease” The New Bioethics
Saunders, S., Ritchie, C., Russ, T., Muniz-Terreira, G. and Milne, R. (2022) "Assessing and disclosing test results for ‘Mild Cognitive Impairment’: The Perspective of Old Age Psychiatrists in Scotland" BMC Geriatrics
Milne, R., Morley, K.I., Almarri, M.A. et al. (2021) “Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries”. Genome Med 13, 92. https://doi.org/10.1186/s13073-021-00903-0
Milne, R. Altomare, D., Ribaldi, F., Molinuevo, J., Frisoni, G. and Brayne, C. (2021) “Societal and equity challenges for Brain Health Services” Alzheimer Research and Therapy
Milne, R., Sorbie, A. and Dixon-Woods, M. (2021) “What can data trusts for health research learn from participatory governance in biobanks?” Journal of Medical Ethics https://doi.org/10.1136/medethics-2020-107020.
Savić-Kallesøe S, Middleton A and Milne R. (2021) Public trust and genomic medicine in Canada and the UK [version 2; peer review: 3 approved]. Wellcome Open Res 2021, 6:124 (https://doi.org/10.12688/wellcomeopenres.16831.2)
Milne, R. (2020). “The Rare and the Common: Scale and the Genetic Imaginary in Alzheimer’s Disease Drug Development.” New Genetics and Society 39 (1): 101–26. https://doi.org/10.1080/14636778.2019.1637718.
Gregory S, Bunnik E, Callado A, Carrie I, Boer C, Duffus J, Fauria K, … Milne, R. (2020). “Involving Research Participants in a Pan-European Research Initiative: The EPAD Participant Panel Experience,” Research Involvement and Engagement. https://doi.org/10.21203/rs.3.rs-23355/v1.
Milne, R. and Brayne, C. (2020) “We need to think about data governance for dementia research in a digital era” Alzheimer’s Research and Therapy 12, 17 https://doi.org/10.1186/s13195-020-0584-y
Milne, R. et al., (2019) “Trust in Genomic Data Sharing among Members of the General Public in the UK, USA, Canada and Australia,” Human Genetics, https://doi.org/10.1007/s00439-019-02062-0.
Milne R., Diaz, A., Bunnik, E., Badger, S., Fauria, K. and Wells, K. (2018) “At, with and beyond risk: expectations of living with the possibility of future dementia” Sociology of Health and Illness
Milne, R. (2018) “From people with dementia to people with data: participation and labour in Alzheimer’s disease research” Biosocieties https://doi.org/10.1057/s41292-017-0112-x
Milne, R., Bunnik, E., Diaz, A., Richard, E., Badger, S., Gove, D., Georges, J., Fauria, K., Molinuevo, J-L., Wells, K., Ritchie,C. and Brayne C. (2018) “Perspectives on communicating biomarker-based assessments of Alzheimer’s disease to cognitively healthy individuals” Journal of Alzheimer’s Disease
Gregory, S., Wells K., Forsyth K., Latto C., Szyra H., Saunders S., Ritchie C, and Milne, R. (2018). “Research Participants as Collaborators: Background, Experience and Policies from the PREVENT Dementia and EPAD Programmes.” Dementia 17 (8): 1045–54. https://doi.org/10.1177/1471301218789307.
Milne, R., Bunnik, E., Tromp, K., Bemelmans, S., Badger, S., Gove, D., Maman, M., Schermer, M., Truyen, L., Brayne, C., Richard, E. (2017) “Ethical issues in the development of readiness cohorts in Alzheimer’s disease research” Journal of Prevention of Alzheimer’s Disease 4(2): 125–131
Milne R (2016) “In search of lost time: age and the promise of induced pluripotent stem cell models of the brain” New Genetics and Society 35(4): 393–408.
Milne, R. (2013) “Arbiters of Waste: Date Labels, the Consumer and Knowing Good, Safe Food. The Sociological Review 60:S2, 84–101. Special Issue Putting Waste on the Food Studies Agenda: Production, Politics and Everyday Life edited by Evans D., Campbell, H and Murcott, A.
Milne, R. (2012) “Pharmaceutical Prospects: Biopharming and the Geography of Technological Expectations” Social Studies of Science 41(2)
Milne, R. (2011) “A focus group study of food safety practices in relation to listeriosis among the over-60s. Critical Public Health, 21(04), pp. 485 - 495.
Milne, R., Wenzer, J., Brembeck, H. and Brodin, M. (2011) “Fraught Cuisine: The Communication and Modulation of Food Anxieties” Distinktion: Scandinavian Journal of Social Theory 12 (2) 177-192
Milne, R. (2010) “Drawing Bright Lines: Food and the Futures of Biopharming” The Sociological Review 58:S1, 133-151 Special Issue Nature After the Genome edited by Parry, S. and Dupre, J.
Milne, R. (2009) “Public Attitudes to Molecular Farming in the UK” AgBioForum 11 (2) 106-113

Costa, A., and Milne, R. (2022) “Understanding ‘Passivity’ in Digital Health through Imaginaries and Experiences of Coronavirus Disease 2019 Contact Tracing Apps.” Big Data & Society 9, no. 1 (January 1, 2022): 20539517221091136. https://doi.org/10.1177/20539517221091138
Murtagh MJ, Machirori M, Gaff CL, et al. (2022) “Engaged genomic science produces better and fairer outcomes: an engagement framework for engaging and involving participants, patients and publics in genomics research and healthcare implementation”. 6:311. Wellcome Open Research. DOI: 10.12688/wellcomeopenres.17233.1.
Atutornu J, Milne R, Costa A, Patch C, Middleton A. (2022) “Towards equitable and trustworthy genomics research.” eBioMedicine.;76. doi:10.1016/j.ebiom.2022.103879
Brenman, N. and Milne, R. (2021) “Lived time and the affordances of clinical research participation” Sociology of Health and Illness
Brenman, N. and Milne, R. (2021) “Ready for what?” Timing and speculation in Alzheimer’s disease drug development” Science, Technology and Human Values https://doi.org/10.1177/01622439211007196.
Middleton, A., Milne, R., et al. (2020). “Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?”. The American Journal of Human Genetics. 107 (4) 743-752 https://doi.org/10.1016/j.ajhg.2020.08.023
Middleton, A. Milne, R. et al. (2019) “Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate their genomic data” European Journal of Human Genetics https://doi.org/10.1038/s41431-019-0550-y
Bartlett, R., Milne, R., & Croucher, R. (2019). “Strategies to improve recruitment of people with dementia to research studies.” Dementia, 18(7-8), 2494-2504.
Middleton A, Milne R, Thorogood A, et al. (2018) “Attitudes of publics who are unwilling to donate DNA data for research.” Eur J Med Genet.. https://doi.org/10.1016/j.ejmg.2018.11.014
Bunnik, E., Richard, E., Milne, R. and Schermer, M. (2018) “On the personal utility of Alzheimer’s disease-related biomarker testing in the research context” Journal of Medical Ethics https://doi.org/10.1136/medethics-2018-104772
Stites, S.D., Milne, R. and Karlawish, J.. “Advances in Alzheimer's imaging are changing the experience of Alzheimer's disease." Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring 10 (2018): 285-300.
Bemelmans, S., Tromp, K., Bunnik, E., Milne, R., Badger, S., Brayne, C., Schermer, M., Richard, E., (2016) “Psychological, behavioral and social effects of disclosing Alzheimer's Disease biomarkers to research participants - a systematic review” Alzheimer’s Research and Therapy 8(46): 46.

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