Much of our research focuses on the impact of recent developments in genetics and genomics and the complexities of delivering nuanced information to patients and public in the context of a deterministic public discourse. For example, negotiating clinical, research and direct to consumer testing boundaries and creating a functioning learning health care environment.
We research issues around consent and confidentiality raised by genomics and the extent to which familial, rather than individual, approaches are appropriate and how these might be operationalised. Other examples include research around the issues related to incidental or additional findings from genomic tests, the ‘immortality’ of genomic data, and the offer of ‘couple’ instead of individual tests for recessive conditions pre-conception.
Our research also examines ethical preparedness in other areas, such as technological advances extending the lives of seriously ill children and preparedness required for appropriate refugee healthcare.
The underpinning approach to our work is bi-directional translation: identifying a problem in practice; undertaking conceptual and empirical research; and then using our findings to effect changes in that practice.
We lead on the data science theme for NIHR Southampton Biomedical Research Centre; are represented on board for UK Biobank; the Genomics England Ethics Advisory Committee .
Anneke Lucassen is current president of British Society for Genetic Medicine. We collaborate with a broad range of academic disciplines in the university through the University’s Ethics Centre (SEC) as well as international rolling joint PhD programme with the University of Groningen. The Genethics Forum is a UK-wide clinical research initiative, co-led by us and with spin-offs in 4 other countries.
We have ongoing funding or recently completed funding from NIHR, CR-UK, HEE (Health Education England) UK Biobank, ESRC and Wellcome Trust.
Read more about the Lucassen group- CELS Oxford — Wellcome Centre for Human Genetics