Anneke Lucassen

My research career started by investigating the molecular genetics of common diseases in the 1990s (during my DPhil in Oxford) with an ambition to translate laboratory findings into the clinic to improve the identification and management of heritable diseases. I soon realised that in order to do so effectively, we first needed to know how to address some of the ethical and legal issues that arise in genetic- and genomic- medicine, and this has been the focus of my research ever since.

As professor of Clinical Genetics at the University of Southampton I set up a translational research group exploring the ethico-legal aspects of big data in medicine, with genomic medicine as a particular example. The Clinical Ethics and Law in Society- CELS- group (www.soton.ac.uk/cels) has a unique combination of expertise in molecular research, social science research, and direct contact with patients resulting in an effective applied ethics pipeline, which focuses on the anticipation -and removal - of barriers to implementation. It functions as an ELSA lab: addressing the ethical, legal and social aspects of developments in big data relevant to health, and as lead for one of 6 themes within the Southampton Biomedical Research Centre [Data, Health and Society].

I was delighted to move [back] to Oxford in September 2021 to set up the CELS-Oxford group in the WTC, funded in part by a Wellcome trust Collaborative award, and working closely with long term collaborator Professor Michael Parker from the Wellcome Trust Centre for Ethics and Humanities, whilst retaining oversight of the CELS-Southampton group.

Our current research programme addresses the benefits of genomic discovery in practice and its direct relevance to patients and society. We have made field changing contributions to understanding the ethical aspects of for example: misattributed genetic relationships; familial contact tracing in genetics; unanticipated clinical predictions from genomic findings genetic testing of children for adult diseases; high rates of spurious results from direct to consumer genetic tests; the hybrid territory between research and clinical practice.  These have been incorporated into clinical guidelines and position statements.

I was appointed as a director for Southampton’s WebScience Institute in 2021 and co-founded the UK Genethics Forum (www.genethicsUK.org), a national professional forum which has been addressing practical ethical issues arising in genetic medicine since 2001.

Our research outputs have helped initiate and shape policy via various national roles. For example, I was a commissioner on the Human Genetics Commission until it was dissolved in 2012; the  Nuffield Council of Bioethics 2009-2015; the HFEA scientific review of treatment of mitochondrial diseases 2011-2014 and I sit on the Genomics England Ethics Advisory committee. I was the inaugural chair of the British Society for Genetic Medicine (BSGM) Ethics and Policy committee, and chaired the society from 2016-2020. I chair the ethics advisory committee of UK Biobank and, from 2022, am chair of  the joint committee of genomic medicine- JCGM (a royal college of physician/ pathology/ BSGM committee).

I am an Honorary Consultant in Clinical Genetics (anneke.lucassen@nhs.net)