Dataset Information

Will Big Data and personalized medicine do the gender dimension justice?

ABSTRACT: Over the last decade, humans have produced each year as much data as were produced throughout the entire history of humankind. These data, in quantities that exceed current analytical capabilities, have been described as "the new oil," an incomparable source of value. This is true for healthcare, as well. Conducting analyses of large, diverse, medical datasets promises the detection of previously unnoticed clinical correlations and new diagnostic or even therapeutic possibilities. However, using Big Data poses several problems, especially in terms of representing the uniqueness of each patient and expressing the differences between individuals, primarily gender and sex differences. The first two sections of the paper provide a definition of "Big Data" and illustrate the uses of Big Data in medicine. Subsequently, the paper explores the struggle to represent exhaustively the uniqueness of the patient through Big Data is highlighted prior to a deeper investigation of the digital representation of gender in personalized medicine. The final part of the paper put forward a series of recommendations for better approaching the complexity of gender in medical and clinical research involving Big Data for the creation or enhancement of personalized medicine services.

Supplementary information

The online version contains supplementary material available at 10.1007/s00146-021-01234-9.

SUBMITTER: Carnevale A

PROVIDER: S-EPMC8169394 | biostudies-literature | 2021 Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Will Big Data and personalized medicine do the gender dimension justice?

Carnevale Antonio A Tangari Emanuela A EA Iannone Andrea A Sartini Elena E

AI & society 20210601 2

Over the last decade, humans have produced each year as much data as were produced throughout the entire history of humankind. These data, in quantities that exceed current analytical capabilities, have been described as "the new oil," an incomparable source of value. This is true for healthcare, as well. Conducting analyses of large, diverse, medical datasets promises the detection of previously unnoticed clinical correlations and new diagnostic or even therapeutic possibilities. However, using ...[more]

PMID: 34092931

Similar Datasets

Project description: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.

Dataset Information

Will Big Data and personalized medicine do the gender dimension justice?

Supplementary information

Publications

Will Big Data and personalized medicine do the gender dimension justice?

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets