Dr Richard Milne
Deputy Director, Kavli Centre for Ethics, Science and the Public
Head of Research and Dialogue, Wellcome Connecting Science
I am a social scientist whose work addresses social and ethical challenges associated with new science and technology and the relationship between science and the public, primarily in the domains of genomics and the development of data-driven medicine. I am based in the Kavli Centre for Ethics, Science, and the Public in the Faculty of Education and in the Engagement and Society Group at Wellcome Connecting Science, which is located alongside the Sanger Institute outside Cambridge. In Cambridge, I also co-lead the 'Ethics, Law and Society' strand of Cambridge Public Health.
I received my PhD in Science and Technology Studies, from the STS department at UCL, and my work broadly fits in the sociology of science and medicine. My PhD research, completed in 2010, focussed on how regulators, researchers and members of the public drew boundaries between 'food' and 'drug' applications of biotechnology in the development of genetically modified crops for the purposes of pharmaceutical production ('pharming'). My PhD was funded through the interdisciplinary Institute of Human Genetics and Health, which meant that a large part of the start of my PhD in the social sciences was spent battling with pipettes and PCR machines. Together with my degree in Human Sciences, (also from UCL), which included a particular focus on genetics, evolutionary biology and the sociology of science, this experience formed the basis of an ongoing commitment to interdisciplinary working at the interfaces of the social and natural sciences. This continues to underpin my research, albeit with the constant question of 'a sociologist, here? why?'. I've held teaching posts at UCL, the University of Sheffield and Birkbeck University of London.
My sociological research examines the ethical and social implications of developments in genomics and data science. In this context I am particularly interested in the relationship between science and 'the public', and in how we anticipate and address emerging challenges associated with discovery science. I also have a longstanding interest in the ethics of early detection in Alzheimer's disease.
Data sharing, Ethics, Social science
Ford, E., Milne, R., Curlewis, K., (2023) Ethical issues when using digital biomarkers and artificial intelligence for the early detection of dementia. WIREs Data Mining and Knowledge Discovery e1492. https://doi.org/10.1002/widm.1492
Frisoni, G.B., Altomare, D., Ribaldi, F., et al. (2023). Dementia prevention in memory clinics: recommendations from the European task force for brain health services. The Lancet Regional Health – Europe. https://doi.org/10.1016/j.lanepe.2022.100576
Milne, R., Sheehan M, Barnes B, Kapper J, Lea N, N’dow J, Singh G, Martín-Uranga A, Hughes N (2022) “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
Bunnik, E., Smedinga, M., Milne, R., Georges, J., Richard, E., and Schermer, M. (2022) “Ethical frameworks for disclosure of Alzheimer’s disease biomarkers to research participants: How to resolve conflicting norms?” Ethics & Human Research
Graham, M., Milne, R., Fitzsimmons, P. and Sheehan, M. (2022) “Trust and the Goldacre Review: Why Trusted Research Environments are Not About Trust” Journal of Medical Ethics
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
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
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)
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
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
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.
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
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.
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