Publications

Electronic copies of CELS’s research output (journal articles, book chapters, conference papers etc.) are available from E-Prints Soton, the University of Southampton's Research Repository. Citation lists can also be found on the profile pages of individual CELS members.

Current and Previous Publications

You will find links to PDF's or webpages for each of the publications listed below.

Annual Report of the Chief Medical Officer - published 04/07/2017 - Generation Genome. The Report’s final chapter (16), ‘Ethics and the Social Contract for Genomics in the NHS’, is co-authored by Prof Anneke Lucassen, CELS-member Prof Jonathan Montgomery, and Prof Michael Parker.

Sandi Dheensa, Daniele Carrieri, Susan Kelly, Angus Clarke, Shane Doheny, Peter Turnpenny, Anneke Lucassen, A 'joint venture' model of recontacting in clinical genomics: challenges for responsible implementation Eur J Med Genet. 2017 May 10. pii: S1769-7212(17)30142-8. doi: 10.1016/j.ejmg.2017.05.001. PMID: 28501562

Jan S Voorwinden, Anne H Buitenhuis, Erwin Birnie, Anneke M Lucassen, Marian A Verkerk, Irene M van Langen, Mirjam Plantinga and Adelita V Ranchor. Expanded carrier screening: what determines intended participation and can this be influenced by message framing and narrative information? European Journal of Human Genetics (2017) 25, 793–800; doi:10.1038/ejhg.2017.74; published online 3 May 2017

Daniele Carrieri, Sandi Dheensa, Shane Doheny, Angus J Clarke, Peter D Turnpenny, Anneke M Lucassen and Susan E Kelly Recontacting in clinical genetics and genomic medicine? We need to talk about it Eur J Hum Genet. 2017 Feb 8. doi: 10.1038/ejhg.2017.8. PMID: 28176765 

Sandi Dheensa, Angela Fenwick, Anneke Lucassen. Approaching confidentiality at a familial level in genomic medicine: a focus group study with healthcare professionals.  BMJ Open. 2017 Feb 3;7(2):e012443. doi: 10.1136/bmjopen-2016-012443. PMID: 28159847 

Daniele Carrieri, Sandi Dheensa, Shane Doheny, Angus J Clarke, Peter D Turnpenny, Anneke Lucassen and Susan E Kelly. Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom European Journal of Human Genetics advance online publication, 4 January 2017; doi:10.1038/ejhg.2016.188

Angela Fenwick, Anneke Lucassen. Ethical Issues in Precision Oncology/Cancer Genetics, Chapter 15

Angela Fenwick, Mirjam Plantinga, Sandi Dheensa & Anneke Lucassen. Predictive Genetic Testing of Children for Adult-Onset Conditions: Negotiating Requests with Parents J Genet Counsel DOI 10.1007/s10897-016-0018-y

Lisa Ballard, Angela Fenwick, Elizabeth Jenkinson & I.K. Temple. Falling short? The psychosocial impact of living with Russell-Silver syndrome

Carolyn Johnston, Natalie Banner & Angela Fenwick.  Patient narrative: an ‘on-switch’ for evaluating best interests Journal of Social Welfare and Family Law,
38:3, 249-262, DOI: 10.1080/09649069.2016.1228146

Mirjam Plantinga, Erwin Birnie, Kristin M Abbott, Richard J Sinke, Anneke M Lucassen, Juliette Schuurmans, Seyma Kaplan, Marian A Verkerk, Adelita V Ranchor and Irene M van Langen. Population-based preconception carrier screening: how potential users from the general population view a test for 50 serious diseases European Journal of Human Genetics (2016), 1–7 & 2016 Macmillan Publishers Limited All rights reserved 1018-4813/16

Henneman L, Borry P, Chokoshvili D, Cornel MC, van El CG, Forzano F, Hall A, Howard HC, Janssens S, Kayserili H, Lakeman P, Lucassen A, Metcalfe SA, Vidmar L, de Wert G, Dondorp WJ, Peterlin B. Eur J Hum Genet. 2016 Mar 16. doi: 10.1038/ejhg.2015.271. PMID: 26980105: Responsible implementation of expanded carrier screening.

Lucassen A. Narrative Inquiry in Bioethics - Volume 5, Number 3, Winter 2015 pp. 214-216 | 10.1353/nib.2015.0071 I Had Genetic Testing for Alzheimer's Disease Without My Consent.

Carrieri D, Lucassen AM, Clarke AJ, Dheensa S, Doheny S, Turnpenny PD, Kelly SE. Genet Med. 2016 Feb 18. doi: 10.1038/gim.2015.194. Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom.

Fenwick A, Shkedi-Rafid S, Lucassen A. Am J Bioeth. 2016 Feb;16(2):25-7. doi: 10.1080/15265161.2015.1120809. PMID: 26832087 [PubMed - in process]; Relative Risk and Relatives' Risks in Genomic Medicine

Sandi Dheensa, Shiri Shkedi-Rafid, Gillian Crawford, Gabrielle Bertier, Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada , Lisa Schonstein, The Centre for Values, Ethics and the Law in Medicine, University of Sydney, Sydney, New South Wales, Australia. Anneke Lucassen,  Management of Incidental Findings in Clinical Genomic Sequencing Studies

Sandi Dheensa, Angela Fenwick, Anneke Lucassen.  ‘Is this knowledge mine and nobody else’s? I don’t feel that.’ Patient views about consent, confidentiality and information-sharing in genetic medicine

Shkedi-Rafid S, Fenwick A, Dheensa S, Wellesley D, Lucassen AM. What results to disclose, when, and who decides? Healthcare professionals’ views on prenatal chromosomal microarray analysis.

Dheensa S, Fenwick A, Shkedi-Rafid S, Crawford G, Lucassen A. Healthcare professionals' responsibility to relatives in genetic medicine: a systematic review and synthesis of empirical research. Genetics in medicine Genet Med. 2015 Jun 25. doi: 10.1038/gim.2015.72.

Otten E, Birnie E, Lucassen AM, Ranchor AV, Van Langen IM. Telemedicine uptake among Genetics Professionals in Europe: room for expansion. Eur J Hum Genet. 2015 Apr 22. doi: 10.1038/ejhg.2015.83. [Epub ahead of print] PubMed PMID: 25898928

Dondorp W, de Wert G, Bombard Y, Bianchi DW, Bergmann C, Borry P, Chitty LS, Fellmann F, Forzano F, Hall A, Henneman L, Howard HC, Lucassen A, Ormond K, Peterlin B, Radojkovic D, Rogowski W, Soller M, Tibben A, Tranebjærg L, van El, CG, Cornel MC. Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening. Summary and recommendations. Eur J Hum Genet. 2015 Nov;23(11):1438-50. doi: 10.1038/ejhg.2015.57. Epub 2015 Mar 18. Erratum in: Eur J Hum Genet. 2015 Nov;23(11):1592. PubMed PMID: 25782669.

Wybo Dondorp*, Guido de Wert, Yvonne Bombard, Diana W Bianchi, Carsten Bergmann, Pascal Borry, Lyn S Chitty, Florence Fellmann, Francesca Forzano, Alison Hall, Lidewij Henneman, Heidi C Howard, Anneke Lucassen, Kelly Ormond, Borut Peterlin, Dragica Radojkovic, Wolf Rogowski, Maria Soller, Aad Tibben, Lisbeth Tranebjærg, Carla G van El and Martina C Cornel on behalf of the European Society of Human Genetics (ESHG) and the American Society of Human Genetics (ASHG): Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening European Journal of Human Genetics advance online publication, 18 March 2015; doi:10.1038/ejhg.2015.57

Lucassen A: BSGM News February 2015 issue 52: Consent and genetic testing: What is good enough for genomics?

Fenwick A, Dheensa S, Crawford G, Shkedi-Rafid S, Lucassen A.  Rescue obligations and collective approaches: complexities in genomics.  Am J Bioeth. 2015 Feb;15(2):23-5. doi: 10.1080/15265161.2014.990763.

Otten E, Plantinga M, Birnie E, Verkerk MA, Lucassen AM, Ranchor AV, Van Langen IM. (2014) Is there a duty to re-contact in light of new genetic technologies? A systematic review of the literature. doi: 10.1038/gim.2014.173.

Shkedi-Rafid S, Fenwick A, Dheensa S, Lucassen AM (2014) Genetic testing of children for adult-onset conditions: opinions of the British adult population and implications for clinical practice. Genet Med. 2014 Dec 11.

Shkedi-Rafid Shiri, Dheensa Sandi, Crawford Gillian, Fenwick Angela, Lucassen Anneke (2014) Defining and managing incidental findings in genetic and genomic practice

Lucassen Anneke and Houlston, Richard S. (2014) The challenges of genome analysis in the health care setting. Genes, 5, (3), 576-585. (doi:10.3390/genes5030576). (PMID:25055201).

Dheensa, S., Williams, R., and Metcalfe, M. (2014) What do men want from antenatal screening? Findings from an interview study in England. Midwifery, doi: 10.1016/j.midw.2014.08.011

Lucassen Anneke, Widdershoven Guy, Metselaar Suzanne, Fenwick Angela and Parker Michael (2014) Genetic testing of children: the need for a family perspective. The American Journal of Bioethics, 14, (3), 26-28.

Fenwick Angela, Johnston Carolyn, Knight Rhona, Testa Georgia and Tillyard Andrew (2013) Medical ethics and law: a practical guide to the assessment of the core content of learning. A report from the Education Steering Group of the Institute of Medical Ethics. Old Bussage, GB, Institute of Medical Ethics, 56pp

Crawford Gillian, Fenwick Angela and Lucassen Anneke (2013) Letter. A more fitting term in the incidental findings debate: one term does not fit all situations European Journal of Human Genetics

Crawford Gillian, Foulds Nicola, Fenwick Angela, Hallowell Nina and Lucassen Anneke (2013) Genetic medicine and incidental findings: it is more complicated than deciding whether to disclose or not. Genetics in Medicine

Lucassen A The debate about incidental findings in clinical practice. Anneke Lucassen’s take on the subject on p50, BSGM Newsletter issue 49, June 2013.

Lucassen A and Fenwick A Testing children for adult onset conditions: the importance of contextual clinical judgement. A commentary for the Journal of Medical Ethics 2012.

Professor Jonathan Montgomery, as a member of Human Genomics Strategy Group, contributed to the report Building on our inheritance.

Lucassen A and Hall A Consent and Confidentiality in clinical genetic practice. A report for the Joint committee on Medical Genetics. Royal College of Physicians 2011.

Lucassen A and Rafi I Genetic testing, families and confidentiality.

Lucassen A and Lucassen E Letting family members know about genetic conditions; how and when? Bionews Jan 2011

Lucassen A, Clancy T, Montgomery J et al. Genetic testing of children. A report for the British Society of Human Genetics 2010

Angela Fenwick, Clinical ethics committee case 11: Is the insertion of a percutaneous endoscopic gastronomy in our patient's best interests? Clinical Ethics 2010;5: 118-121

Lucassen A Parker M. Confidentiality and sharing genetic information with relatives. Lancet. 2010 May 1;375(9725):1507-9. PubMed PMID: 20435216.

Angela Fenwick, Are guidelines for genetic testing of children necessary? Familial Cancer 2010;9(1): 23-25

Lucassen A, Hill C, Wheeler R. 'Ethnicity testing' before adoption; a help or hindrance? Arch Dis Child. 2010 Jun;95(6):404-5

Lucassen A, Wheeler R. Legal implications of tissue. Ann R Coll Surg Engl. 2010 Apr;92(3):189-92. PubMed PMID: 20412669.

Wheeler RA Predictive testing for pre-malignancy as a prelude to adoption? An English case. Familial Cancer 2010 9 71-74

Wheeler RA. Editorial. The evolution of consent. ARCS 2010 92 91-92

Lucassen A, Clancy T. Genetic testing in children. Where are we now? Fam Cancer. 2010 Mar;9(1):1. PubMed

Woodcock T, Wheeler RA. Law and Medical Ethics in organ transplant surgery. ARCS 2010 92 282-285

Woodcock T, Biggs H. Chapters in Law and Ethics in Intensive Care. C. Danbury, C. Newdick, A. Lawson and C. Waldmann (editors). Published by Oxford University Press, Oxford, UK. 2010 this publication is available for purchase on Amazon: