It is now almost twenty years since pharmacogenetics was heralded as the technology most likely to revolutionize medicine by providing personalized medicine to patients and health consumers. While much attention has been focused on the scientific limits and policy failures that have prevented the widespread uptake of personalized medicine to date, this feature article examines the socio-cultural and political aspects of pharmacogenomics and other related technologies such as online genetic testing that aim to deliver personalized medicine. I suggest that science and technology are ‘ co-produced’ with, and shaped by, culture, politics and economics in relation to one another. Drawing on the UK Nuffield Council of Bioethics recently published report, Medical Profiling and Online Medicine: The Ethics of Personalized Healthcare in a Consumer Age, I explore the concept of the ‘consumer’ that has been built into these technologies and argue that despite the push from the commercial sector and the often uncritical acceptance of this by governments, the commercialization of personalized medicine will not succeed unless the benefits are considered as beneficial by those who use it. Such technologies do have the potential to improve healthcare but in order for this to be realized we need a more in-depth understanding of what patients and consumers actually want from such services and we must engage with them as well as doctors and other healthcare professionals. In particular more research is needed to document the experiences of patients and consumers who have utilized services to date, as well as how personalized medicine in its broadest sense is already being delivered by doctors and healthcare practitioners in the clinical context. Finally, a more robust ‘ contextualized’ development of personalized medicine will take considerable effort to achieve if we are to ensure that health inequalities are not further exasperated between the populations of more technologically and economically advanced countries and those living in poor less economically developed ones.
Consumer, co-production of science, culture, ethics, medicine, online genetic testing, personalized medicine, pharmacogenomics
Peninsula Medical School, Portland Square, University of Plymouth, Plymouth, Devon, England, PL4 8AA.