Table of Contents Table of Contents
Previous Page  115 / 280 Next Page
Information
Show Menu
Previous Page 115 / 280 Next Page
Page Background

well as ensure knowledge about and access to these resources for

research, which have been entrusted to the scientific community by

patients and donors for altruistic reasons of solidarity.

In relation to the work on the General Data Protection Regulation (GDPR),

BBMRI-ERIC acknowledges and embraces its great potential for the

European Research Area. In relation to health research, it could become

a major tool for allowing simplified transnational research and cross-

border exchange of data. Thus, the GDPR has to be set up in a manner

to provide a balance of protecting the individual and allowing the benefits

to reach society at large.

It is equally important to ensure the close collaboration and dialogue

between not only researchers and biobankers but also the public, patient

advocacy groups and the biotech/pharmaceutical industry, which BBMRI-

ERIC addresses through its Stakeholder Forum, which could pave the

way for a new research and engagement culture.

Connecting the community

In reaching its pan-European goals, BBMRI-ERIC largely builds on the

participation in Horizon 2020 projects. The ADOPT BBMRI-ERIC project,

for instance, aims at boosting and accelerating the implementation of

BBMRI-ERIC and its common services.

Furthermore, the CORBEL project will establish a collaborative framework

of shared services between all the ESFRI biological and medical sciences

(BMS) research infrastructures that transform the European research

community, from discovery of basic biological mechanisms to applied

medical translation through the provision of a unified interface, aligned

services and co-ordinated user access to a range of advanced

technology platforms.

BBMRI-ERIC is co-leading the CORBEL project and leads the ELSI work

package, which aims at establishing one common service ELSI for all

BMS research infrastructure. BBMRI-ERIC furthermore co-ordinates the

RITRAIN project and participates in B3Africa, CY Biobank, PhenoMenNal,

EGI-ENGAGE, EMTRAIN and BioMedBridges, as well as BBMRI-LPC and

RD Connect.

Ultimately, BBMRI-ERIC is a specific European asset having become a

fundamental component in addressing the ongoing and future

requirements of Europe’s health service frameworks, in particular, including

the competitiveness and innovativeness of health-related industries.

the basis for national, as well as transnational,

research consortia based on the entire samples

and data from various sites. It also allows for

highly targeted research where small teams

achieve statistical significance of their results

by combining their resources throughout

Europe. This approach extends previous

catalogue-based solutions by enabling the

processing of requests on a sample-based

level, explicitly challenging the privacy aspect

and solving it at least on the first level by

delivering highly aggregated data.

BBMRI-ERIC will provide a one-stop access to

the collections of the European biobanking

community, expertise and services, ultimately

facilitated by the Common Service IT. The

access procedure was initially outlined during

the preparatory phase in the BBMRI business

plan. BBMRI-ERIC aims at evolving into one of

the most important instruments for biomedical

and clinical discovery and takes up the

responsibility to ensure that samples and data,

which donors have entrusted for the common

good, are used in the best way possible for

the advancement of knowledge, eventually

contributing to improved healthcare.

Realising potential

Bearing in mind the need for better prevention,

diagnostics and therapy for all European

citizens, we are aware that every single sample

affects our ability to comprehend disease.

Acknowledging that the majority of samples

stored in the various biobanks across Europe

are currently underused, we believe in the

moral responsibility to properly safeguard as

MT Mayrhofer

BBMRI-ERIC

Common Service ELSI

B R OW S E

www.bbmri-eric.eu

H O R I Z O N

2 0 2 0

www.horizon2020projects.com

H O R I Z O N 2 0 2 0 P R O J E C T S : P O R TA L

I S S U E S E V E N

115

H E A L T H & P AT I E N T D ATA

Human biological

samples with 2D

barcode replacing

donor’s identity