The participatory turn in medicine – Which letter in the alphabet?
This commentary in the Genomics Law Report’s ongoing series What ELSI is New? is contributed by Barbara Prainsack, King’s College London Centre for Biomedicine & Society.
Leroy Hood recently predicted the emergence of ‘P4 medicine – predictive, personalized, preventive and participatory’.1 Particularly the final P in ‘P4’ seems to hit a nerve: Craig Venter already hailed the ‘democratization of genomics’2 as part of a participatory turn in medicine, and 23andMe launched a ‘Do-It-Yourself revolution’ in disease research.3
It is indeed a welcome development that growing numbers of people can access genetic and other health information (personalised and otherwise) relatively easily, and that specialised medical knowledge is no longer the prerogative of those with a professional education. (The blurring of the divide between ‘lay people’ and professional experts, which currently takes place in personal genomics, arguably accounts for some of the latter’s concern about this newly emerging market.) But the participatory turn in medicine is also indicative of an ongoing individualisation of responsibility in health care4: The more knowledge we can obtain, the more we will be expected to obtain, and to pay for.
If we get sick when we could have prevented it, social and financial costs are often the result. It is one of the most challenging, but also most crucial tasks of ELSI research to ensure that people’s gain in power and agency will not be outweighed by the ‘gain’ in responsibility, new health duties, and blame. Taking the tenets of ‘P4 medicine’ seriously means that we should learn from people’s experiences and expectations – and ‘people’ is not restricted here to those who already participate. Otherwise we might get R4 instead of P4: a kind of medicine which is limited to those of us who are responsible, resilient, rich, and RSS-fed.
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1 Leroy Hood. A Doctor’s Vision of the Future of Medicine. Newsweek (July 13, 2009).
2 Craig Venter in an interview with the San Francisco Chronicle, June 11, 2009, pE1.
3 23andMe blog Spittoon on July 7, 2009.
4 Rose, N. The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton University Press (2006).
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