Personalized medicine, ethics and the prospects of a liberal eugenics?

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Personalized medicine is heralded as the new paradigm in health care. As Prof. Michael Snyder puts it, “it is now possible to have your entire DNA sequence (your genome) decoded, measure tens of thousands of biomolecules in your body, use sensors to continuously follow physiology and activity, and characterize the microbial community that lives in your gut and other parts of your body” (Snyder, 2016). Obviously, all these data need to be integrated and interpreted to serve as a reliable guide to future health management, illness prediction, treatment and prevention. The use of algorithms (and AI) is expected to play a central role in identifying new diagnostic patterns from lab results (and wearables etc.) and assisting clinicians in detecting concrete risks of polypharmacy. However, all these measurements will also have the potential to guide individuals in other areas of life, such as the choice of lifestyle, education, jobs, partners and future children. Leading health experts have stressed the importance of understanding the basic principles of these novel digital technologies, in order to engage in critical discussion about their merits, scientific limitations and ethical dilemmas. Since our knowledge about the genome is nowhere complete and since we know that many of the current insights about the genome will be revised in the course of time, we are often faced with serious ethical dilemmas relating to its predictive power. Hence, fundamental epistemological and ethical questions about what we need (and want) to know, what counts as knowledge and to what extent predictions about the future can and should be made on the basis of accumulated, assembled, measurable and computable data are currently being negotiated between clinicians, researchers, administrators, industry, patients and citizens.
In my talk I will address a series of ethical dilemmas relating to predictions based on health data, including genomic data. I will discuss Prof. Michael Snyder’s future scenario, where people are having their genome sequences determined before birth and where epigenomes and a wealth of other information will be commonly used to predict, diagnose and treat disease. A customized treatment plan will be routinely developed for each person and the citizen or patient is expected to participate actively in self-monitoring activities and make proactive choices regarding their medical destiny and that of our children. Customized treatment will be decided mainly by treatment algorithms, which can be administered outside the domain of the health system. Hence the traditional doctor-patient relationship has fundamentally changed. To what extent this future scenario is in fact legitimizing new forms of behavioral and moral control and might promote a new kind of liberal eugenics, will be the major theme of my talk.
Note: Michael Snyder is the Standford Ascherman Professor, Chair of the Department of Genetics, and Director of the Center for Genomics and Personalized Medicine at Standford University. The book referred to is entitled, Genomics & Personalized Medicine, Oxford University Press, 2016.

Original languageEnglish
Publication date24 Aug 2021
Publication statusPublished - 24 Aug 2021
EventThe 34rd World Congress of the International Federation of Biomedical Laboratory Science - Bella Center Copenhagen, Copenhagen, Denmark
Duration: 24 Aug 202128 Nov 2021


ConferenceThe 34rd World Congress of the International Federation of Biomedical Laboratory Science
LocationBella Center Copenhagen
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