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The German Ethics Council said there was a

strong consensus amongst the speakers that

there is an urgent need for a public debate

about the benefits and opportunities, as well as

the shortcomings and risks, arising from the

availability of comprehensive records.

Seeking answers

Taking the backdrop of this substantial growth

in big health data and growing concerns

regarding the use of this information, the

German Ethics Council has said that ‘the new

abundance of data, in addition to opportunities,

creates new challenges for the interpretation of

diagnosis, treatment and research’ and has

warned that ‘data could increasingly supplant

the personal doctor-patient contact’.

As a result, the council is seeking answers to

the following questions in order to form an

opinion on the use of big health data:

n

What are the implications of the

interconnection of data on the doctor-

patient relationship?;

n

What does a more intense and often hardly

noticeable collection of health data do for

individual self-awareness and freedom?;

n

How can individuals, researchers and

companies deal with this data responsibly?;

n

How can the quality and reliability of

complex data evaluations be secure?;

n

How can confidence in the research be

preserved if test data can be decrypted?; and

n

How can the legislature under Big Data

conditions contribute to an effective

protection of health data?

Defining its view

Following the conference, Portal gathered the

views of Dr Nora Schultz, scientific officer at the

German Ethics Council, on the outcome of the

conference discussions and its key areas of

interest in its investigation.

Schultz said: “The German Ethics Council is

interested in both the potential benefits of Big

Data in the health sector and in the ethical and

W

ith the quantity of digital data increasing exponentially each

year, the health community is now seeking to harness

some of the benefits of this growing phenomenon. Health

data is being collected in a variety of forms, notably patient records,

online medical forms and health surveys, mobile apps and social

networks. Now researchers, medical practitioners, and private companies

are looking to realise the potential of this growing data minefield that

helps to provide an insight into health and lifestyle trends and could assist

in new breakthroughs using increasing advanced analytical techniques.

In May, over 500 delegates gathered for the annual meeting of the

German Ethics Council in Berlin, where discussions took place on

big health data. During the debate, attendees outlined their views on

the collection and storage of data and the linking of different

datasets, as well as discussing the importance of balancing

potentially major advances in medicine that utilise big health data

with arising ethical and legal challenges.

Debating data

Opening the annual meeting, Christiane Woopen, chair of the German

Ethics Council, said: “Let us work together to ensure that people do

not leave through biologic … self-perception and lifestyles as well as

data-driven efficiency hype and optimisation mania … but come in a

full life to be with each other.”

Adding his thoughts, the deputy chair of the German Ethics Council,

Professor Dr Peter Dabrock, expressed the fear that without an

international regulation, the possible quantitative summarisation of

Big Data-driven forecasts could lead to a qualitative loss of freedom

yet will be sold as increasing self-determination.

Addressing attendees during his keynote speech at the conference,

Günther H Oettinger, European Commissioner for Digital Economy and

Society, commented that “through the entire value chain”, there is

“too little digital sovereignty”.

I S S U E S E V E N

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110

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

Assessing the data

As the German Ethics Council begins its study into big health data,

Portal

outlines

the key issues being explored following the organisation’s annual meeting

The growth of big

health data presents

both opportunities and

challenges, says the

German Ethics Council