RegulationsBarrier or Protection?

Bogi Eliasen

FUTURES STUDIES

POSSIBLEWhat might happen?

PROBABLEWhat will likely happen?

PREFERABLEWhat do we want to happen?

EXPLORATIVE PREDICTIVE NORMATIVE

How do we understand the world?

CRITICALFUTURES

FORECASTING

Three branches of futures studies

• Relativism• Alternatives• Chaos theory• Network society• Future knowledge

• Empiricism• Linear• Determinism• Experts• Current knowledge

• Post-structuralism• Agency• Complex adaptive systems• Participatory action• Value judgments

Key Principles:

Future perspectives

Current perspectives

“Seeing is believing”

Pastperspectives

“The good old days”

Futureperspectives

“Bring the change”

Challenge:- How do we align everybody?

Megatrends influencing the future

Transactional environment

Contextualenvironment

Megatrends

• Social• Technology• Economic • Environmental• Political • Legal• Ethical

Opportunities

Threats

2026

MegatrendsNetwork society

Sustainability

Knowledge society

Immaterialization

Democratization

Acceleration and complexity

Technologic development

Economic growth

Demographic development

Focus on health

Polarization

Globalization

Commercialization

Individualization

Source: OECD Health Data 2013 and CIFS forecast

Network Society

Wearables and self-monitoring

Individualization

Drugs for every need – healthy or ill?

1 in 5 of Nature’s readers admit having used drugs to improve mental ability

Commercialization

Digitalization

Sundheds, data & deling

Immaterialization

Globalization

Benefits of personal health approach

• Diagnose disease more accurately

• Select optimal therapies and target medicineand dosages more precisely

• Increase safety, reduce adverse drug reactions

• Detect onset of disease at the earliest moments

• Shift emphasis in medicine from reaction toprevention

• Increase the efficiency of the health system by improving quality, accessibility and affordability

Precicion Medicine Initiative

The New Billion and Health

Parties

Citizen Society Academia

Health System Public System Business

National & Global Frames

Health Privacy Sharing Collectivity vs. Individuality

Big Data Jurisdiction Democratization Access, Control, Ownership

Business movements

Early detection – the Grail Vision

Health 3.0

• Bill Bunting, EMC

From Feel Good to Do Good

Source:

• Precision & personalising

• Health system – not a disease system

• Preventive approach necessarily means working with healthy individuals

• Combining clinic & research

• Health systems will demand real health output as part of contracts of therapy, medication

Internationale Organisationer

UNESCO - International Declaration on Human Genetic Data 2003

UN Human Rights (OHCHR) Res 71 2001

European Council Oviedo 1997

UN: Universal Declaration on the Human Genome and Human Rights 1997/98

The Citizen Biobank

Source:

• Patient organizations pooling information:

• PatientsLikeMe and Crohnology.com

• Wearables, devices & telemedicine: continous inflow of real time data

• Providing information for better health

Health & Wellbeing

Source:

• Precision & personalising

• Health system – not a disease system

• Preventive approach necessarily means working with healthy individuals

• Combining clinic & research

• Health systems will demand real health output as part of contracts of therapy, medication

• Safety & Security

Patient VS Citizen

Source:

• Patient is in a clinical context – and possible a research context

• Today healhty people might be in research

• Future is blurring health and illness

• Preventive approach is health initiative before clinic

• Sequencing healthy people enables preventive health

• How can we understand health if we only look at disease?

Data in the Wilderness

Source:

Discussions

Needed Discussion

Source:

To know or not to know?- Return of results and

the right to know- Dynamic consent

• Protection VS Usability• Preparing the individual• Anonymity?• Insurance and

unintended use

• Genomic data is health data – alsoin use

• Not deterministic• Vulnerable? • Stigmatizing

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