Ethical, legal and social implications of preventative medicine

Preventative medicine is not without costs, and not just financial ones. Genetic testing, in particular, raises difficult questions. The upcoming Health-RI Conference (Jan 17, 2019) on P4 Medicine explores some of the issues.

At first sight, preventative medicine looks like a no-brainer. As the saying goes, prevention is better than cure. In reality, however, preventative medicine can lead to difficult decisions and a great deal of soul-searching. For example, what if preventing a disease means preventing a birth. A parallel session titled ‘Prevention: Individuals given tailored tools to prevent disease development’ at the upcoming Health-RI Conference (Thursday, January 17, 2019 in Utrecht), will take a look at some of the ethical, legal and social implications (ELSI) associated with genetic screening and data mining in healthcare, using practical examples of trials and initiatives that have already been rolled out in the Netherlands.

Irene van Langen, Professor of Clinical Genetics at the University of Groningen, will discuss the results of a pilot study in which general practitioners offered a couple-based expanded carrier screening (ECS) test – genetic testing to identify couples at increased risk of having children affected by specific genetic diseases – to 5000 women in order to establish the feasibility, probable uptake rate, acceptor and decliner characteristics, and the psychological impact of ECS testing. While Irene’s talk will look at genotypical risk, the following discussion led by Vincent Jaddoe, Professor of Pediatric Epidemiology at Erasmus University Medical Center, Rotterdam, will look at early-life phenotypic stressors linked with individual biological, developmental and health trajectories leading to the onset of diseases such as cardiovascular disease or diabetes, using examples from studies in the Dutch Generation R and international child cohort networks. In the final discussion, Andre Dekker, Professor and Medical Physicist at Maastricht University, will cover the critical issue of data privacy when mining databases for healthcare, preventative medicine and research purposes, describing a novel concept called the ‘Personal Health Train’ (PHT) that securely takes the research question to the data rather than moving the data to the research question, thus avoiding many of the ELSI barriers associated with physical data sharing. Data, and the way it is securely curated and used, are a central component of the single, national, interconnected research infrastructure that Health-RI is creating in the Netherlands to maintain the country’s reputation as a world leader in life-science research.

All the parallel sessions at the Health-RI Conference are interactive, so if lively discussion about P4 Medicine and how it can be brought to reality fits with your own work or interests, make a note in your diary (Thursday, January 17, 2019) to attend this thought-provoking session and contribute your ideas.

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