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Biobanking for epidemiology
O3-5.5 Legal-ethical issues related to access to biobanking at international level
  1. M Deschenes
  1. Public Population Project in Genomics (P3G), Montreal, Canada

Abstract

Significant amounts of resources, often public, are invested to setup large research infrastructures (biobanks) and cohorts.

The technical challenges of connecting these research infrastructures are increasingly being met by new IT solutions. Harmonisation tools—like the one developed at P3G- enhance our capacity to synthesise data. As this opens new opportunities for research and increase statistical power, these research infrastructures hold enormous potential for epidemiological research.

The issue of “access” is central to epidemiological research. Once a set of “interesting” data has been targeted, the researcher must overcome the ethical, legal and other conditions to actually access the data and samples of interest. In addition, study specific conditions (eg, access to aggregate data only) may limit the choice of methodologies to analyse synthesizable data.

A more “open access” culture for research data requires properly managing and accessing the massive amount of potentially sensitive information in a way that will be of optimal use for the scientific community while also ensuring proper protection and respect of participants (including their privacy and confidentiality). The “law” is often blamed for creating “undue hurdles” to international access to research data, but are we focusing on the real problem?

We will discuss some ethical, legal and social issues challenges faced by researchers who wish to access multiple research infrastructures to conduct epidemiological research. We also identify avenues of innovative solutions being proposed to meet some of these challenges.

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