Julia el Mecky is a Medical Anthropologist and one of the ELSI (joint) Ph.D. students in a collaboration with the Clinical Ethics and Law Southampton (CELS) Group of Anneke Lucassen. From British Southampton, and with an insider’s view, Julia studies how cultural aspects impact the handling of genetic data by professionals, patients, and the public in both the Netherlands and Great Britain. To this end, she attended various meetings and interviewed different colleagues and patients. In her dissertation, Julia combines this empirical knowledge with theories on (medical) care from her subject area perspective.
Genetics generates ever more data, e.g. within whole exome sequencing and whole genome sequencing research and analysis. The significance of all this data is not always known, yet whether it should be included in test results has to be assessed. With the results of her research, Julia hopes to be able to help care workers cope with questions such as:
- What is "good care" in this case, and who determines it?
- Is the value of uncertain information the same in any situation? Or can this vary, for example in the diagnosis of a child born ill or in prenatal screening?
- Do care workers and patients concur? If not, what are the differences? How can they be explained?
Julia’s research thus contributes to the responsible implementation of innovations in genetic techniques and any corresponding counselling.
Jacobien Niebuur is postdoctoral researcher in the ELSI research group with a background in economics and epidemiology. She is conducting research into communication and decision-making aspects around the implementation of Pharmacogenomic (PGx) screening within a research setting. This project is part of the PGx strategic screening programme – a collaboration between ELSI researchers, Lifelines Next and Lifelines. Within the PGx screening programme, PGx profiles are generated for Lifelines Next and Lifelines participants and returned to them within pilot studies. The use of this PGx information on the individual level can contribute to the optimization of patient treatment by improving the effectiveness of medication and reducing adverse drug reactions.
ELSI research into the communication and decision-making aspects of PGx aims to ascertain the conditions for returning PGx results to Lifelines (Next) participants in a feasible and responsible way that optimizes the use of information by participants and their healthcare professionals, including general practitioners and pharmacists. Requirements for responsible implementation of PGx profiles include understanding of the PGx information provided and clarity about the allocation of responsibilities for using the PGx between participants and healthcare professionals involved in their treatment. Using a combination of qualitative and quantitative methods, participant’s attitudes, perceptions and expectations will be assessed and (determinants of) uptake studied. Other stakeholder views, including those of general practitioners and pharmacists, will be assessed using focus group sessions to explore their views on the barriers and facilitators for implementation and their expectations about the allocation of responsibilities between healthcare providers.