Prof Anneke Lucassen, theme lead for data science

Prof Anneke Lucassen is leading our data Anneke_Lucassensciences research theme at our NIHR Biomedical Reseach Centre since 202018.


Anneke Lucassen leads our NIHR Biomedical Research Centre’s research into the use of large datasets for personalised medicine and the cross cutting data science theme since July 2018. As well as delivering on disease exemplars data sets that seamlessly interface research and clinical practice, she is also designing a route to integrating clinical and research governance so that all patients attending UHS can assume their data will be made available for appropriate research and clinical uses in a bidirectional way.

Combined experise

She is Professor of Clinical Genetics within Medicine at the University of Southampton and combines key clinical, laboratory and ethico-legal expertise to research developments in genetic medicine and to affect improved delivery of genomic services to individuals and families.

She has integrated her molecular research experience (PhD in the molecular genetics of multifactorial disease, Oxford) and 20+ years of busy clinical practice, to examine the problems of translating an exponentially increasing amount of detailed molecular genetic information into useful clinical information.  In doing so she tackles head on some of the ethico-legal issues that big data, and in particular genomic data, rises. In 2001 she co-founded the UK Genethics Group ( which is a national forum for the analysis of ethico-legal issues arising in genetic practice, which has held more than 50 national meetings to date. She leads the Clinical Ethics and Law research unit in the Faculty of Medicine, Southampton.


Her leadership role in national policy development and implementation of best practice is evidenced by appointment to the Human Genetics Commission until 2012; Nuffield Council of Bioethics 2009-2015; Member of HFEA scientific review of treatment of mitochondrial diseases 2011-2014 and Genomics England Ethics Advisory committee 2013 onwards. She has played a key role in the development, and running of, the Wessex Genome Medicine Centre and its transition to NHS genomic medicine service.

In 2013 she was awarded a prestigious visiting professorship to Groningen University, the Netherlands (-2017). The legacy of this is a rolling programme of 4 year joint PhDships between the two universities.

In 2017 she was awarded a £1.2 million collaborative research grant from the Wellcome Trust together with Prof Farsides at Brighton and Sussex Medical School to explore the NHS readiness to deal with genomic data. She is on the board of UK Biobank and chairs its new Ethics Advisory Committee. She is currently Chair of the British Society for Genetic Medicine.