The University of Southampton
Medicine

Professor Anneke Lucassen BMedSci, MBBS, DPhil(Oxon), FRCP

Professor of Clinical Genetics, Honorary Consultant in Clinical Genetics, Wessex Clinical Genetics Service,Clinical Ethics and Law Unit, Faculty of Medicine

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Anneke Lucassen 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 effect improved delivery of genomic services to individuals and families.

What has fascinated me over the last 20 years is combining very different skill sets to approach genomic developments in an interdisciplinary way. The bottleneck for genomic medicine has shifted from cost/ technology limitations to interpretation, and there is much to think about.

Anneke did her higher medical training in Oxford before doing a PhD in the molecular genetics of multifactorial disease at the Institute of Molecular Medicine (Oxford). She specialised in Clinical Genetics, was appointed to Consultant in Oxford in 1997 and became Professor of Clinical Genetics in Southampton in 2007. 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 to useful clinical information.  Her particular interest is the ethico-legal aspects raised by new genomic technologies. In 2001 she co-founded the UK Genethics Group (www.genethicsUK.org) which is a national forum for the analysis of ethico-legal issues arising in genetic practice, which has held nearly 50 national meetings to date. She co-leads the Clinical Ethics and Law unit in the Faculty of Medicine, Southampton (CELS: www.soton.ac.uk )

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 was the inaugural chair of the British Society for Genetic Medicine Ethics and Policy committee, and plays a key role in the development, and running of, the Wessex Genome Medicine Centre.

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 Bobbie Farsides at Brighton and Sussex Medical School. This will fund a 5 year programme of research entitled “Facilitating ethical preparedness in genomic medicine” which aims to develop and deliver empirical and conceptual bioethics research as genomic medicine becomes an integral part of healthcare. 

From 2017 she is Chair of the British Society for Genetic Medicine.

Research

Responsibilities

Publications

Teaching

Contact

Research interests

For more information visit the Clinical Ethics and Law at Southampton website

Our research explores how the rapid developments in genetic and genomic technologies are integrated into clinical practice and society. By bringing together different areas of research, teaching and practice from different disciplines, we have created a novel niche that is effective in contextualising genetics to a broad audience. Our aim is to define an ethical and legal framework that serves current clinical practice and accommodates future developments in genetic research.  Our research has explored (amongst other topics):

  1. Predictive genetic testing of children
  2. Incidental, additional and uncertain findings from genomic technologies
  3. Consent and confidentiality issues in genomic medicine
  4. Preconceptual couple testing for multiplex recessive diseases
  5. The hybrid space where clinical practice and research need to co-exist in genomics
  6. From 2017 we will embark on a 5 year programme of work funded by the Wellcome Trust (collaborative award with Prof Farsides BSMS) facilitating ethical preparedness in genomic medicine

National Policy formulation

An important spinout from the work in this area is the formulation of national policy and best practice guidelines. Examples of national guidelines we have co-authored include: BSHG: genetic testing of children (2010) and for the Joint Committee on genomic Medicine: Consent and confidentiality in genetic practice (Royal College of Physicians 2011, currently being revised). Membership of two different NICE panels (familial hypercholesterolaemia and familial breast cancer) further illustrate this.

Our chapter in the CMO’s annual report 2016 summarises many of the key ethical issues our research explores: www.gov.uk/government/uploads/system/uploads/attachment_data/file/631043/CMO_annual_report_generation_genome.pdf

We are keen to engage with members of the public about our research. We hold regular local events (please see https://www.southampton.ac.uk/cels/ for details) and welcome email contact from interested parties.

Academic unit(s)

Cancer Sciences Academic Unit

Affiliate academic unit(s)

Cancer Sciences Research group

Postgraduate student supervision

Current

Caroline Huang: International comparisons in BRCA management (Rhodes Scholar, with Professor Michael Parker, Uo Oxford)
Juliette Schuurmans: Couple testing and expanded carrier testing preconceptually
Julia El Mecky: Ethical aspects of incidental, additional and uncertain findings through genome testing

National and International responsibilities

Co-founder and organiser of the UK Genethics Group (www.genethicsUK.org)
Chair, Southampton University Hospitals Trust Clinical Ethics Committee (member since 2002)
Member Ethics Advisory Committee Genomics England (since 2013)
Chair British Society for Genetic Medicine

Previously:

Member of the Human Genetics Commission 2009- 2012
Chair of UK Cancer Genetics Group 2009-2012
Member ethics and governance council UK biobank 2006-2009
Member of the Nuffield Council of Bioethics 2009-2015
The ‘Bijtel’ honorary Professorship, Groningen university, The Netherlands 2014-2017
Wellcome Trust ‘Expert review group’ panel member from (2010-2016)
Wellcome Trust Consortium Data Access Committee member (2011-2016)

Articles

Letter/Editorial

Books

Book Chapters

Clinical coordinator for ethics and law teaching to undergraduate students at Southampton medical school

Together with Dr Angela Fenwick (Associate Professor in medical education and ethics) she has developed the curriculum to ensure the law and ethics is integrated appropriately throughout BM programmes; providing teaching; coordinating teachers who teach for the theme and assessing the students’ learning.

BMedSci: Supervision of up to 3 students per year in Clinical Ethics and Law

MSc: Coordinator ELSI module for Genomic Medicine MSc with Angela Fenwick

Professor Anneke Lucassen
Direct email: a.m.lucassen@soton.ac.uk
PA: Lisa Scott; L.M.Scott@soton.ac.uk; Tel: 023 8120 4489 Address: c/o Wessex Clinical Genetic Service, MP105 PAH SO165YA or Clinical ethics and law (CELS) office room 203 Level B South Academic Corridor SGH

Room Number:9550 PAH/Level G

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