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An ethical framework for the use of health-related Big Data

 

An interdisciplinary team is investigating complex ethical questions raised by the Big Data revolution in medicine. What form should declarations of consent take in cases where individuals are making their health data available to researchers – and how can protection of their privacy be guaranteed?

Portrait / project description (ongoing research project)

The use of Big Data in medical research calls for the widespread collection, dissemination and evaluation of large quantities of personal and confidential information. This entails risks which need to be carefully assessed. To this end, our interdisciplinary team of experts is focusing on four main areas:

  1. We wish to understand the new types of ethical challenges facing the healthcare industry.
  2. We will develop guidelines for the ethical evaluation of Big Data projects.
  3. We will create a user-friendly platform that gives patients and healthy individuals an opportunity to participate directly in research.
  4. We will propose rules designed to ensure the responsible development of health research in the Big Data domain.

Background

Ever more aspects of human health are being converted into data that can be evaluated both clinically and scientifically. This data can be collected not only by medical specialists but by anyone (with a smartphone, for instance). Current bioethical guidelines and provisions have fallen behind these rapid developments in the healthcare sector.

Aim

The present project addresses existing shortcomings in the ethical use of Big Data in medical research. We will focus on topics such as risk-benefit analysis, declaration of consent, protection of privacy and control mechanisms, with the dual objective of:

  1. creating efficient tools for the ethical evaluation and handling of Big Data in the healthcare sector, and
  2. making recommendations on overcoming the current obstacles to medical research in Switzerland.

Relevance/application

This project will have a tangible practical impact. Our tools will streamline ethical assessment, and will offer research subjects novel ways to take direct control over ethically relevant aspects of their involvement with big data research projects. Moreover, our policy recommendations – developed in conjunction with stakeholders and international collaborators– will promote the role of Switzerland as a key player in the global arena of big data health research.

Original title

BEHALF - Bigdata-Ethics-HeaLth Framework

Project leaders

  • Prof. Effy (Eftychia) Vayena, Institut für Epidemiologie, Biostatistik und Prävention, Universität Zürich
  • Professeur Christian Lovis, Radiology and medical informatics, Service d'Informatique médicale, Hôpitaux Universitaires de Genève
  • Prof. Milo Puhan, Institut für Epidemiologie, Biostatistik und Prävention, Universität Zürich
  • Professeur Samia Hurst, Institut Ethique Histoire Humanités, Faculté de Médecine, Université de Genève

 

 

Further information on this content

 Contact

Prof. Effy (Eftychia) Vayena Dep. Gesundheitswiss. und Technol
ETH Zürich
HOA H 12
Hottingerstrasse 10
8092 Zürich effy.vayena@uzh.ch

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