Lucassen group- CELS Oxford

Rapid technological advances promise to provide improvements in medical care, yet their implementation requires understanding of many contextual factors 

New technologies bring their own set of challenges that must be addressed if they are to be successfully integrated into practice and deliver long term positive change. The CELS group brings together interdisciplinary expertise to address the ethical, legal and societal issues of implementing new technologies through research, education, policy engagement and public dialogue.

CELS researches real-life issues that are sometimes missing from these celebrated promises for science and healthcare practice through interdisciplinary approaches. 

Examples of our research include issues related to

• ethical preparedness in  Genomic Medicine (EPPiGen)
• environmental sustainability and personalised medicine
• diversifying genomic data,
• exploring how results are constructed in whole genome approaches
• familial communication of genetic information
• consent and confidentiality in genomic medicine

Examples of research projects

Ethical Preparedness in Genomic Medicine (EPPiGen)

The rapid advances in genomic technology have been well documented, as has the potential for genomics to lead to important improvements in our understanding of health and the diagnosis and treatment of disease. The consequences for  healthcare practices, systems, professionals and patients, and their ability to assimilate these changes, has been given less consideration.

EPPiGen was a Wellcome Trust Collaborative Award [Grant number 208053/B/17/Z]. in Humanities and Social Science, PIs Lucassen and Farsides (at Brighton and Sussex Medical School). The research examined how the promise and challenge of genomic medicine was understood and experienced by those providing and engaging with the service and how an ethical approach will require more than governance and off the shelf rules and regulations. EPPiGen was an interdisciplinary programme that combined empirical bioethics research, conceptual and theoretical analysis, and professional and public engagement to examine the concept of ethical preparedness in the context of genomic medicine.

We have examined the perspectives of three groups engaged with genomic medicine for the EPPiGEN project including health professionals, patients and the general public. Please find reports aimed at decision makers and those with an interest in clinical genetics services below:

Health Professionals - please find report here
Patients - report to follow soon 
General Public - report to follow soon

See also for example: Using Hospital Data To Improve Healthcare - YouTube and podcasts eg Series 2 Episode 4 - Newborn genome screening | University of Oxford Podcasts

Construction of results in genomic testing

 Genetic tests used to focus on tiny parts of the genetic code. Clinicians would decide which parts of the genetic code to look at depending on a patient’s symptoms or family history. A laboratory test would look at these parts in detail, trying to find where the genetic code was different, in order to explain the patient’s health problems.

 Progress with technology means that now it is often cheaper and faster to look at all of the genetic code in one go (genomic testing), rather than picking out tiny sections to look at one-by-one. Genomic tests trawl the entire genetic code looking for differences in the code (variants). However, each person has over four million variants in their genetic code. Most variants won’t affect health at all. Some might predict health risks that are unrelated to the reason why a person chose to have a genomic test in the first place. Other variants might increase a patient’s chance of having children with serious illnesses, and there are many variants where no-one knows whether they matter or not. For each genomic test,  millions of of genetic variants need to be sifted to decide which should form the genomic result and which is communicated to the patient.

The difficulties of developing systems to filter variants from the genetic code, and interpreting what medical consequences variants might lead to, are often couched as technical problems. However, the decisions made during these processes have big impacts on people’s lives and the ethical work that this creates for scientists and clinicians needs attention.

Wellcome Trust Research Award for Health Professionals 2019 (218092/Z/19/Z) Dr Rachel Horton

Animation illustrating challenge of determining results from a genetic code: https://www.youtube.com/watch?v=Bgvq8Gbl56c

Podcast discussing this and other ethical issues relating to genomic medicine: https://podcasts.ox.ac.uk/series/centre-personalised-medicine

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