The University of Southampton

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

Professor of Clinical Genetics, Honorary Consultant in Clinical Genetics, Wessex Clinical Genetics Service,Co-ordinator: Ethics and Law teaching Southampton Faculty of Medicine

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Professor 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, with a particular interest in cancer and cardiac genetics. She was appointed to Consultant/ Senior Lecturer in Oxford in 1997, moved to Southampton in 2000 and became Professor of Clinical Genetics in 2007.

Her early research into the genes that are involved in susceptibility to type 1 diabetes, led to an interest in the problems of assimilating an exponentially increasing amount of detailed molecular genetic information into clinical practice and the ethical and legal aspects raised by the clinical practice of genetics. In 2001, with collaborators at Ethox (University of Oxford) and Wellcome Trust funding, she cofounded the UK Genethics Group which is a national forum for the exploration of ethico-legal issues arising in genetic practice.

She retains a foot in the molecular genetics laboratory through a variety of collaborations, and leads an interdisciplinary programme of research into the social, ethical and legal aspects of developments in genetics. She set up the multidisciplinary unit CELS: Clinical ethics and law at Southampton which pulls together the diverse interests in these subjects across the faculty of medicine, and promotes research in this area as well as research led teaching.

These interests led to a leadership role in national policy development and implementation of best practice and she sat on the Human Genetics Commission until 2012 and has been on the Nuffield Council of Bioethics since 2009. She chairs the British Society of Genomic Medicine’s ethics and policy committee. She is a member of Genomics England ethics advisory committee and plays a key role in the current development of the Wessex Genome Medicine Centre.

In 2013 she was awarded a prestigious visiting professorship to Groningen University, the Netherlands; the Bijtel professorship which runs from 2014-2016. Through this a rolling programme of 4 year joint PhDships has just been awarded with the first doctoral student starting in 2015.






Research interests

More information on:

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 genetics practice and accommodates future developments in genetic research. Some of our current funded research (Wellcome Trust, NIHR, and BUPA Foundation) illustrates this:

Predictive genetic testing of children

A host of national and international guidelines recommend that genetic testing is deferred in childhood unless there are immediate medical benefits but there is very little empirical evidence behind this recommendation. Using both a survey of current practice across the UK and in-depth interviews of parents, young people and practitioners, the study aims to provide an evidence basis to guidance and help improve communication about these issues.

Consent and confidentiality in genetic medicine

Despite the recognition by the GMC and the Joint Committee of Medical Genetics that the familial nature of genetic data can cause difficulties in practice, there is little in-depth knowledge about what different parties think about the issues raised. Is a genetic test result an individual result that can only be disclosed to others with specific consent? Or does a test result really something that ‘belongs’ to all the family members who might also have inherited it? The research explores the views of patients, patient support groups, healthcare professionals and academics, in order to shed light on how clinical practice might take these into account.

Clinically Relevant Incidental findings from new genetic technologies

Rapid advances in the speed and cost of methods to explore a human genome means that a genetic test performed for clinical reasons may indicate genetic diagnoses or predispositions entirely unanticipated, or related to the reasons for the test. This research explores the consent and disclosure issues associated with these changes using both qualitative and quantitative ethodology. Furthermore the additional tensions that such testing might raise in the prenatal setting are also being studied.

National Policy formulation

An important spinout from the work in this area is the formulation of national policy and best practice guidelines. Examples of recent national guidelines hawse have co-authored include: BSHG: genetic testing of children ( and for the Joint Committee on Medical Genetics: consent and confidentiality in genetic practice (Royal College of Physicians In Press). Membership of two different NICE panels (familial hypercholesterolaemia and familial breast cancer) further illustrate this.

We are keen to engage with members of the public about our research. We hold regular local events (please see 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


Gill Crawford: Clinically relevant Incidental findings from new genetic technologies
Caroline Huang: International comparisons in BRCA management (Rhodes Scholar, with Professor Michael Parker, Uo Oxford)
Catherine Mercer: Genetics of hypoplastic left heart syndrome

National and International responsibilities

Co-founder and organiser of the UK Genethics Group (
Member of the Nuffield Council of Bioethics from 2009-2015
The ‘Bijtel’ honorary Professorship, Groningen university, The Netherlands 2013-2015
Wellcome Trust ‘Expert review group’ panel member from (since 2010)
Wellcome Trust Consortium Data Access Committee member (since 2011)
Scientific advisory board member - Deciphering developmental delay study (DDD) Cambridge
Chair Southampton University Hospitals Trust Clinical Ethics Committee (since 2007)
Editorial Board: Clinical Ethics Journal (since 2005)


Member of the Human Genetics Commission till 2012
Chair of UK Cancer Genetics Group till 2012
Council member: British Society of Human Genetics (BSHG)
Council member: Joint Committee of Medical Genetics (JCMG)
Council member: Association of Inherited Cardiac disorders
Co-opted NICE panel Familial Hypercholesterolaemia 2008; Guideline Development Group NICE Familial Breast Cancer 2011-2012


Professor Anneke Lucassen
PA: Lisa Scott;; 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




Book Chapters

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

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

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


Professor Anneke Lucassen
PA: Lisa Scott;; 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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