Plastic diagnostics: The remaking of disease and evidence in personalized medicine (original) (raw)
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Social theory & health, 2024
This paper explores the complementary and contrasting uses of the terms 'personalized medicine' and 'precision medicine' in denotations of a biomedical approach attentive to individual specificities that harnesses genomics and other data-intensive profiling technologies. Drawing on qualitative interviews conducted with biomedical experts in the context of the Precision Medicine Initiative in the United States and the 100,000 Genomes project in the United Kingdom, we read definitional reflection and debate through the lens of the sociologies of expectations and novelty. We observed two key aspects in the shift from 'personalized medicine' to 'precision medicine' that has been especially prevalent in the United States. First, the term 'precision medicine' enables its proponents to rhetorically depart from the idea that this approach to medicine can be expected to deliver individually personalized treatments-an expectation that is seen as unrealistic by many. Second, it enables its proponents to assert that personalization, when understood as caring about the patient as an individual person, is not a new approach to medicine but rather something that many medical professionals have always aimed to do (eliding in the process other experiences of US healthcare as, for instance, alienating and discriminatory). We argue that the shift from 'personalized' to 'precision' medicine can be regarded as a manifestation of performative nominalism: an attribution of 'newness' that contributes to performing and propelling innovation, rather than solely reflecting it. In so doing, rhetorical demarcations between personalized and precision medicine emerge as performatively contributing to the production of different biomedical ontologies.
Lagging Behind? Are Regulations Keeping Pace With The Precision Medicine Revolution
Today's Esquire, 2022
The ultimate path that precision medicines will take is unclear, although it is already apparent that diseases that hitherto were classed as ‘untreatable’ can potentially be treated (and, in a few cases, are being treated). These conditions are genetic diseases and certain cancers. While scientific thinking has advanced and technologies have followed suit, the ethical issues that stem from these innovations are lagging. These ethical issues relate to privacy, data security, and law. To tailor treatments for patients requires the capture and analysis of vast amount of patient-centric data. However, doubts are being expressed as to how well-equipped global health systems are to handle such data and over the level of maturity that exists in terms of ethical and legal regulation. Sandle, T. (2022) Lagging Behind? Are Regulations Keeping Pace With The Precision Medicine Revolution?, Today’s Esquire, 14th November 2022 at: https://www.todaysesquire.com/2022/11/14/lagging-behind-are-regulations-keeping-pace-with-the-precision-medicine-revolution/
BMC Medical Informatics and Decision Making, 2009
Background: In recent years, the completion of the Human Genome Project and other rapid advances in genomics have led to increasing anticipation of an era of genomic and personalized medicine, in which an individual's health is optimized through the use of all available patient data, including data on the individual's genome and its downstream products. Genomic and personalized medicine could transform healthcare systems and catalyze significant reductions in morbidity, mortality, and overall healthcare costs. Discussion: Critical to the achievement of more efficient and effective healthcare enabled by genomics is the establishment of a robust, nationwide clinical decision support infrastructure that assists clinicians in their use of genomic assays to guide disease prevention, diagnosis, and therapy. Requisite components of this infrastructure include the standardized representation of genomic and non-genomic patient data across health information systems; centrally managed repositories of computer-processable medical knowledge; and standardized approaches for applying these knowledge resources against patient data to generate and deliver patient-specific care recommendations. Here, we provide recommendations for establishing a national decision support infrastructure for genomic and personalized medicine that fulfills these needs, leverages existing resources, and is aligned with the Roadmap for National Action on Clinical Decision Support commissioned by the U.S. Office of the National Coordinator for Health Information Technology. Critical to the establishment of this infrastructure will be strong leadership and substantial funding from the federal government. Summary: A national clinical decision support infrastructure will be required for reaping the full benefits of genomic and personalized medicine. Essential components of this infrastructure include standards for data representation; centrally managed knowledge repositories; and standardized approaches for leveraging these knowledge repositories to generate patient-specific care recommendations at the point of care.
Science and Public Policy, 2020
Modern-day healthcare is becoming increasingly information intensive including at the personal level. The genomic data made available by the Human Genome Project gave this trend a great deal of impetus as did the more recent emergence of big data analytics alongside unprecedented computing power including artificial intelligence, enabling the generation of useful health-relevant information out of vast genomic and other data sets. Digitally recorded and annotated genetic and other molecular information acquired from large numbers of people, especially when combined with other information (lifestyle, family, personal electronic health history records, etc.) coming from a wide range of sources, can provide not only a massive volume of health-related data for analysis, but also diversity in kinds of information we can derive, from responsiveness to drugs, to likelihood of contracting particular diseases, and ways to prevent or reduce risk of certain diseases later in life. It is not just healthcare in the broad sense that is moving onto computer screens; medicine is becoming digital as much as it is chemical, especially when treatment concerns itself more and more with disease prediction, diagnosis, prognosis, and monitoring of sickness, health and treatment effects and side-effects, and of course with personalisation.
… 2004: proceedings of …, 2004
Bioinformatics and Medical Informatics are disciplines that up to now have followed separate development with few contacts and synergies between them in Europe. The elucidation of the human genome has however evidenced the need and the possibilities for a strong synergy between the two. Classical epidemiological and clinical research on the one hand, and genomic research on the other, separately considered, are no longer enough for advancing in the so-called genomic medicine, and a new integrative approach is required. Biomedical Informatics is the emerging discipline that aims to put these two worlds together so that the discovery and creation of novel diagnostic and therapeutic methods is fostered. On the basis of the results of the European Commission-funded BIOINFOMED Study, an INFO-BIOMED Network of Excellence has been recently constituted with the main objective of setting a durable structure for the described collaborative approach at a European level. Initially formed by fifteen renowned European organisations, the main objective of the INFOBIOMED network is therefore to enable the reinforcement of European BMI as an integrative discipline.
Beyond full jurisdiction: pathology and inter-professional relations in precision medicine
New Genetics and Society, 2020
institutional changes and drivers (including digital transformation), on institutional entrepreneurship, and leadership, and on power in and between organizations. Two main themes run through Patrick Castel's research: the organization of medical activities and the processes of institutional change involved in this, and the processes of designing and implementing public healthcare policies (especially, obesity). He has worked on the organization of patient management for cancer patients, the processes by which recommendations for clinical practice are produced and implemented, and the organization of clinical and translational research. He has published articles in academic journals, such as Organization science, Social studies of science, The Lancet, Social Science & Medicine. Audrey Vézian's research focuses on the implementation of biomedical policies. Taking the creation of new regional, public entities as an example, her PhD examined the role of research administration practices in the spread of biomedicine in France. Currently, her work has focused on the potential of big data in health contexts, and their consequences on the organization of medical activities.
Personalized medicine and preventive health care: juxtaposing health policy and clinical practice
Critical Public Health, 2019
Health care systems around the globe are currently orienting themselves towards 'personalized medicine', a medical care regime aimed at individualizing prevention, diagnosis, and treatment of disease through proliferating amounts and sources of data, including genetic information. In Denmark, national health policies on personalized medicine focus on harnessing the potentials of genomic science and technology to bring knowledge about patient-specific genetic variation into clinical application. A major hope is to improve public health and prevent common diseases by integrating genomic information in health care, yet to act preventively, a temporal path has to be established defining what kind of knowledge to create and to act upon, and when. This paper explores the temporal orderings of medical knowledge in two different areas: health policy and clinical practice. Examining policy papers on personalized medicine issued by Danish governmental and research institutions, and, comparing them with contemporary practices of using genetic information in preventive cardiac health care, we demonstrate that genetic knowledge-making is ordered around two different conceptual views of time: namely the sequential order and the speed with which such knowledge is produced. We argue that the visions of knowledge-making and early intervention through genomic science and technology as conveyed in policy papers on personalized medicine, challenge preexisting practices and understandings of what constitutes timely prevention and actionable knowledge within clinical care. We close the article discussing how prevention through genomics amplifies the significance of the clinical space for public health as a site for sense-making and translation of controversial genetic knowledge.
An Index of Barriers for the Implementation of Personalised Medicine and Pharmacogenomics in Europe
Public Health Genomics, 2014
views with key stakeholders. Furthermore, surveys were sent out to representatives of stakeholder groups. The index was constructed based on the priorisation of relevant factors by stakeholders. Results: A need for stakeholder-agreed standards at all levels of implementation of PM exists, from validating biomarkers to definitions of 'informed consent'. The barriers to implement PM are identified in 7 areas, namely, stakeholder involvement, standardisation, interoperable infrastructure, European-level policy making, funding, data and research, and healthcare systems. Conclusions: Challenges in the above-mentioned areas can and must be successfully tackled if we are to create a healthier Europe through PM. In order to create an environment in which PM can thrive for the patients' best outcomes, there is an urgent need for systematic actions to remove as many barriers as possible.
The Hastings Center report, 2017
The United States' ambitious Precision Medicine Initiative proposes to accelerate exponentially the adoption of precision medicine, an approach to health care that tailors disease diagnosis, treatment, and prevention to individual variability in genes, environment, and lifestyle. It aims to achieve this by creating a cohort of volunteers for precision medicine research, accelerating biomedical research innovation, and adopting policies geared toward patients' empowerment. As strategies to implement the PMI are formulated, critical consideration of the initiative's ethical and sociopolitical dimensions is needed. Drawing on scholarship of nationalism and democracy, we discuss the PMI's construction of what we term "genomic citizenship"; the possible normative obligations arising therefrom; and the ethical, legal, and social challenges that will ensue. Although the PMI is a work in progress, discussion of the existing and emerging issues can facilitate the de...