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My Data, My Choice? - German Patient Organizations' Attitudes towards Big Data-Driven Approaches in Personalized Medicine. An Empirical-Ethical Study.

ABSTRACT: Personalized medicine (PM) operates with biological data to optimize therapy or prevention and to achieve cost reduction. Associated data may consist of large variations of informational subtypes e.g. genetic characteristics and their epigenetic modifications, biomarkers or even individual lifestyle factors. Present innovations in the field of information technology have already enabled the procession of increasingly large amounts of such data ('volume') from various sources ('variety') and varying quality in terms of data accuracy ('veracity') to facilitate the generation and analyzation of messy data sets within a short and highly efficient time period ('velocity') to provide insights into previously unknown connections and correlations between different items ('value'). As such developments are characteristics of Big Data approaches, Big Data itself has become an important catchphrase that is closely linked to the emerging foundations and approaches of PM. However, as ethical concerns have been pointed out by experts in the debate already, moral concerns by stakeholders such as patient organizations (POs) need to be reflected in this context as well. We used an empirical-ethical approach including a website-analysis and 27 telephone-interviews for gaining in-depth insight into German POs' perspectives on PM and Big Data. Our results show that not all POs are stakeholders in the same way. Comparing the perspectives and political engagement of the minority of POs that is currently actively involved in research around PM and Big Data-driven research led to four stakeholder sub-classifications: 'mediators' support research projects through facilitating researcher's access to the patient community while simultaneously selecting projects they preferably support while 'cooperators' tend to contribute more directly to research projects by providing and implemeting patient perspectives. 'Financers' provide financial resources. 'Independents' keep control over their collected samples and associated patient-related information with a strong interest in making autonomous decisions about its scientific use. A more detailed terminology for the involvement of POs as stakeholders facilitates the adressing of their aims and goals. Based on our results, the 'independents' subgroup is a promising candidate for future collaborations in scientific research. Additionally, we identified gaps in PO's knowledge about PM and Big Data. Based on these findings, approaches can be developed to increase data and statistical literacy. This way, the full potential of stakeholder involvement of POs can be made accessible in discourses around PM and Big Data.

SUBMITTER: Rauter CM

PROVIDER: S-EPMC7900081 | biostudies-literature | 2021 Feb

REPOSITORIES: biostudies-literature

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My Data, My Choice? - German Patient Organizations' Attitudes towards Big Data-Driven Approaches in Personalized Medicine. An Empirical-Ethical Study.

Rauter Carolin Martina CM Wöhlke Sabine S Schicktanz Silke S

Journal of medical systems 20210222 4

Personalized medicine (PM) operates with biological data to optimize therapy or prevention and to achieve cost reduction. Associated data may consist of large variations of informational subtypes e.g. genetic characteristics and their epigenetic modifications, biomarkers or even individual lifestyle factors. Present innovations in the field of information technology have already enabled the procession of increasingly large amounts of such data ('volume') from various sources ('variety') and vary ...[more]

PMID: 33616768

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Project description:BackgroundAccountable care organizations (ACOs) are proliferating as a solution to the cost crisis in American health care, and already involve as many as 31 million patients. ACOs hold clinicians, group practices, and in many circumstances hospitals financially accountable for reducing expenditures and improving their patients' health outcomes. The structure of health care affects the ethical issues arising in the practice of medicine; therefore, like all health care organizational structures, ACOs will experience ethical challenges. No framework exists to assist key ACO stakeholders in identifying or managing these challenges.MethodsWe conducted a structured review of the medical ACO literature using qualitative content analysis to inform identification of ethical challenges for ACOs.ResultsOur analysis found infrequent discussion of ethics as an explicit concern for ACOs. Nonetheless, we identified nine critical ethical challenges, often described in other terms, for ACO stakeholders. Leaders could face challenges regarding fair resource allocation (e.g., about fairly using ACOs' shared savings), protection of professionals' ethical obligations (especially related to the design of financial incentives), and development of fair decision processes (e.g., ensuring that beneficiary representatives on the ACO board truly represent the ACO's patients). Clinicians could perceive threats to their professional autonomy (e.g., through cost control measures), a sense of dual or conflicted responsibility to their patients and the ACO, or competition with other clinicians. For patients, critical ethical challenges will include protecting their autonomy, ensuring privacy and confidentiality, and effectively engaging them with the ACO.DiscussionACOs are not inherently more or less "ethical" than other health care payment models, such as fee-for-service or pure capitation. ACOs' nascent development and flexibility in design, however, present a time-sensitive opportunity to ensure their ethical operation, promote their success, and refine their design and implementation by identifying, managing, and conducting research into the ethical issues they might face.

Project description:BackgroundIn recent years, personalized medicine (PM) has become a highly regarded line of development in medicine. Yet, it is still a relatively new field. As a consequence, the discussion of its future developments, in particular of its ethical implications, in most cases can only be anticipative. Such anticipative discussions, however, pose several challenges. Nevertheless, they play a crucial role for shaping PM's further developments. Therefore, it is vital to understand how the ethical discourse on PM is conducted, i.e. on what - empirical and normative - assumptions ethical arguments are based regarding PM's current and future developments.MethodsTo gather this information, we conducted a qualitative interview study with stakeholders in the German health care system. Our purposive sample included 17 representatives of basic research, clinical research, health economics, regulatory authorities, reimbursement institutions, pharmaceutical industry, patient organizations, as well as clinicians and legal experts involved in PM developments or policy making. We used an interview guide with open-ended questions and analyzed transcriptions of the interviews by means of qualitative content analysis.ResultsThe respondents addressed a multitude of concerns in the context of research on as well as application of personalized preventive and therapeutic measures both on the individual and on the societal level. Interestingly, regarding future developments of PM the ethical evaluation seemed to follow the rule: the less likely its application, the more problematic a PM measure is assessed. The more likely its application, on the other hand, the less problematic it is evaluated.ConclusionsThe results of our study suggest re-focusing the ethical discourse on PM in Germany towards a constructive ethical monitoring which ensures to include only, nevertheless all of the actual and/or potential concerns that are ethically relevant in order to allow balancing them against the actual and potential ethically relevant benefits of PM measures. To render this possible, we propose a strategy for evaluating ethical concerns in the context of PM.

Project description:Sustainability is typically viewed as consisting of three forces, economic, social, and ecological, in tension with one another. In this paper, we address the dangers posed to societal sustainability. The concern being addressed is the very survival of societies where the rights of individuals, personal and collective freedoms, an independent judiciary and media, and democracy, despite its messiness, are highly valued. We argue that, as a result of various technological innovations, a range of dysfunctional impacts are threatening social and political stability. For instance, robotics and automation are replacing human labor and decision-making in a range of industries; search engines, monetized through advertising, have access to, and track, our interests and preferences; social media, in connecting us to one another often know more about us than we ourselves do, enabling them to profit in ways which may not coincide with our well-being; online retailers have not only acquired the ability to track and predict our buying choices, but also they can squeeze vendors based on their outsize bargaining power; and, in general, virtual technologies have changed both the way we think and our sense of self. With the rising deployment of the Internet of Things, and developments in machine learning and artificial intelligence, the threats to individual freedoms and rights, societal cohesion and harmony, employment and economic well-being, and trust in democracy are being ratcheted up. This paper lauds the benefits and addresses the harm wrought by the high tech giants in Information and Communication Technologies (ICTs). The search for rapidly growing revenues (and shareholder returns and stock prices) drives firms to accelerate product innovation without fully investigating the entire gamut of their impacts. As greater wealth accrues to the leaders of tech firms, inequalities within firms and societies are widening, creating social tensions and political ferment. We explore the ethical nature of the challenge employing a simple utilitarian calculus, complemented by approaches rooted in rights, justice, and the common good. Various options to address the challenges posed by ICTs are considered and evaluated. We argue that regulation may do little more than slow down the damage to society, particularly since societal values and political preferences vary internationally. Firms need to establish ethical standards, imbuing the upholders of these standards with sufficient authority, while creating a culture of morality. User involvement and activism, and shareholders' concerns for the sustainability of societies on whose continued prosperity they depend, are imperative to humanity's ability to decide the future direction of technology.

Project description:BACKGROUND:The concepts of disease, illness and sickness capture fundamentally different aspects of phenomena related to human ailments and healthcare. The philosophy and theory of medicine are making manifold efforts to capture the essence and normative implications of these concepts. In parallel, socio-empirical studies on patients' understanding of their situation have yielded a comprehensive body of knowledge regarding subjective perspectives on health-related statuses. Although both scientific fields provide varied valuable insights, they have not been strongly linked to each other. Therefore, the article aims to scrutinise the normative-ethical implications of patient perspectives in building a bridge to the empirical ethics debates. MAIN TEXT:Three potential fields of tension between the illness and the disease perspective are presented. Consequently, findings from empirical research examining patient perspectives on illness are displayed and the practical implications and associated ethical issues which arise are discussed. This leads to the conclusion that an explicit and elaborate empirical-ethical methodology is needed to deal appropriately with the complex interaction between patients' views and the medico-professional view of disease. Kon's four-stage model of normative-empirical collaboration is then applied against the background of empirical data on patient perceptions. Starting from this exemplary approach, the article suggests employing empirical-ethical frameworks for further research on the conceptual and normative issues, as they help to integrate perspectives from the philosophy of medicine with socio-empirical research. CONCLUSION:The combination of theoretical and empirical perspectives suggested contributes to a more nuanced discussion of the normative impact of patients' actual understanding of illness. Further empirical research in this area would profit from explicitly considering potential ethical issues to avoid naturalistic fallacies or crypto-normative conclusions that may compromise healthcare practice. Vice versa, medico-theoretical debates could be enriched by integrating subjective views of those people who are immediately affected.

Dataset Information

My Data, My Choice? - German Patient Organizations' Attitudes towards Big Data-Driven Approaches in Personalized Medicine. An Empirical-Ethical Study.

Publications

My Data, My Choice? - German Patient Organizations' Attitudes towards Big Data-Driven Approaches in Personalized Medicine. An Empirical-Ethical Study.

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