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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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