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The University of Southampton
Clinical Ethics and Law at Southampton

"Rapid technological advances promise big improvements in medical care. The world needs leadership in understanding and responding to the ethical and societal impact of these radical changes. CELS brings together interdisciplinary expertise to meet this need by addressing the ethical, legal and societal issues through research, education, policy engagement and public dialogue".

GEP fellow, Dr Lisa Ballard, publishes research on patient experience

Lisa Ballard and her co-authors hope their findings about the consent process for genomic testing will inform the new NHS Genomic Medicine Service. The consent process for genomic testing is complex and involves communicating multiple considerations. Lisa tells us more about her recent research into the experience of patients who took part in the 100,000 Genomes Project, and what we can learn from them

CELS publishes educational article on direct-to-consumer genetic testing

Recently, members of CELS wrote an article about direct-to-consumer genetic testing that was published in the BMJ. The article discussed concerns that people buying direct-to-consumer tests might be falsely reassured by ‘negative’ results, and the issue that people who download and look at raw data from direct-to-consumer genetic tests might get worrying false positive results. This BMJ article was discussed in the national news, with Anneke Lucassen being quoted by the BBC News website, the Guardian, SkyNews and the Daily Mail online. The article was also cited in the recent position statement on direct-to-consumer genomic testing by the Royal College of GPs and the British Society for Genetic Medicine.

Tafida Raqeeb Judgment Summary: Continuation of Life-Sustaining Treatment in Italy held to be in Child’s Best Interests

This week, Mr Justice MacDonald handed down his judgment in the High Court, holding that continuation of medical treatment was in Tafida Raqeeb’s best interests. The effect of this decision being that she can be treated in Italy, in line with the wishes of her parents. This is a post from Transparency Project member, Emma Nottingham & Peta Coulson-Smith (Paeds Registrar, and Clinical Training Fellow & Senior Teaching Fellow in Clinical Ethics and Law at the University of Southampton)...

Professor Anneke Lucassen has been made a Senior Fellow of the PHG Foundation.

The accolade recognises individuals from across the world who have made significant professional contributions to fields closely related to the Foundation’s own policy work around genomics and biomedicine, and who have supported the Foundation’s mission to make science work for health. The PHG Foundation is a non-profit think tank with a special focus on how genomics and other emerging health technologies can provide more effective, personalised healthcare and deliver improvements in health for patients and citizens.

The latest Joint Committee guidelines on Consent and confidentiality in genomic medicine released

July 2019: This edition was written by Anneke Lucassen (Professor and honorary consultant in clinical genetics, Faculty of Medicine, University of Southampton and Wessex Clinical Genetics Service, University Hospitals Southampton, UK; and chair of the British Society for Genetic Medicine) and Alison Hall (head of humanities, PHG Foundation, Cambridge, UK; and chair of the Ethics and Policy Committee of the British Society for Genetic Medicine).

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