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Contents
Executive
summary
5
Intr oduction
to
the
charge
of
the
World
Economic
Forum
Global
Pr ecision
7
Medicine
Council
Gover nance
gap
1: Data
sharing
and
interoperability
10
Focus
area
1: Demonstrating
value
in
the
standardization
of
disparate
10
data
to
determine
genotype
and
phenotype
r elationship
Focus
area
2: Enabling
interoperability
across
dif fer ent
standar ds
to
13
impr ove
diagnosis
and
resear ch
Focus
area
3: Patient
engagement
and
participation
15
Notation
of
ongoing
challenges
in
governance
gap
16
Summary
and
r ecommendations
17
Gover nance
gap
2: Ethical
use
of
technology
18
Focus
area
1: Informed
consent
18
Focus
area
2: Just
distribution
of
benefits
19
Focus
area
3: Inclusiveness
and
r epresentation
21
Notation
of
ongoing
challenges
in
governance
gap
22
Summary
and
r ecommendations
23
Gover nance
gap
3: T rust
and
engagement
24
Focus
area
1: Understanding
and
appr opriately
building
societal
trust
in
24
health
data
use
and
access
Focus
area
2: Incr easing
awar eness
of
genomics
26
Focus
area
3: Addr essing
the
impact
of
dir ect-to-consumer
testing
(DTC)
27
on
trust
Notation
of
ongoing
challenges
in
governance
gap
28
Summary
and
r ecommendations
29
Gover nance
gap
4: Access
and
fair
pricing
30
Focus
area
1: Ensuring
evidence
of
safety
and
ef fectiveness
throughout
30
fast-track
drug
life
cycles
Focus
area
2: Need
for
a
national
patient
r egistry
31
Focus
area
3: Patentability
of
biomarkers
32
Focus
area
4: Global
standar ds
for
new
diagnostic
pricing
models
33
Notation
of
ongoing
challenges
in
governance
gap
34
Summary
and
r ecommendations
34
Gover nance
gap
5: Responsive
r egulatory
systems
36
Focus
area
1: Data
privacy
and
data
ownership
36
Focus
area
2: Obligations
to
patients
37
Focus
area
3: Acceptable
applications
of
pr ecision
health
data
and
issues
38
surr ounding
dir ect-to-consumer
testing
Notation
of
ongoing
challenges
in
governance
gap
39
Summary
and
r ecommendations
40
Conclusions
and
next
steps
41
Contributors
43
Global
Pr ecision
Medicine
Council
43
Acknowledgements
44
Endnotes
45
Executive
summary
The
benefits
of
pr ecision
medicine
in
terms
of
superior
health
and
healthcar e outcomes
are
incr easingly
clear , but ther e
are
challenges
to
the
equitable
and
widespr ead
dissemination
of
pr ecision
medicine
tools,
technologies
and
solutions. The
World
Economic
Forum
convened
mor e
than
40
leaders
fr om
the
public
and private
sectors,
civil
society
and
academia
in
a
Global
Pr ecision
Medicine
Council (the
Council)
in
2019
to
help
shape
the
governance
of
pr ecision
medicine
in
the
public
inter est.
This
document
is
the
Council ’ s
synthesis
of
the
key
policy
and governance
gaps,
and
its
vision
for
the
solutions
to
over come
them.
It
should serve
as
a
r efer ence
for
the
gr eater
healthcar e
community
with
an
inter est
in helping
deliver
these
benefits
on
a
global
basis.
These
five
governance
gaps
ar e:
1)
data
sharing
and
interoperability;
2)
ethical
use of
technology;
3)
patient
and
public
engagement
and
trust;
4)
access,
deliver y,
value,
pricing
and
r eimbursement;
5)
r esponsive
r egulator y
systems .
Using
illustrative
examples
of
solutions
or
analytical
frameworks
to
over come
these
five
gaps,
the
Council
pr ovides
ar eas
of
opportunity
to
accelerate
pr ecision
medicine appr oaches
globally.
The
main
considerations
and
r ecommendations
include:
– Incr easing
awar eness
of
the
benefits
of
data
standardization
and
interoperability and
fostering
trusted
mechanisms
of
collaboration
involving
patients
to
unlock
the
vast
amounts
of
data
needed
– Lear ning
lessons
fr om
resear ch
ef forts
that
wer e
discriminatory
or
hurtful
and focusing
new
ef forts
on
inclusivity
and
r epr esentativeness
to
support
ethical technology
development
– Building
public
and
patient
trust
and
engagement
by
encouraging
deliberation and
mechanisms
on
if/how
genetic
and
other
sensitive
health
data
are
accessed
or
used
by
commer cial
companies
and
law
enfor cement
– Innovating
intellectual
pr operty
pr otection
r egimes
for
biomarkers
and
algorithms
as
part
of
the
pr ocess
of
incentivizing
investment
in
foundational new
diagnostics
– Funding
and
publicly
r eporting
post-market
clinical
trials
and
studies
for
fast-
track
therapeutics
that
allow
healthcar e
pr oviders
to
clearly
understand
the
value of
pr ecision
medicine
tr eatments
and
receive
payments
based
on
performance
– Designing
and
implementing
consistent
and
appr opriate
r egulatory
frameworks that
pr otect the
health
information
generated
fr om
dir ect-to-consumer
genetic services
in
a
way
that
support
the
values
of
patients
and
participants
Unfortunately,
mor e
than
half
of
the
world ’ s
population
still
has
no
access
to
pr ecision
medicine
and
is
unable
to
r eap
the
benefits.
W e
must
be
ever
vigilant about
incr easing
the
capabilities
of
many
countries
and
populations
to
join
this global
movement
towards
mor e
personalized
and
targeted
ways
of
scr eening,
pr eventing,
diagnosing,
tr eating
and
curing
patients
with
disease.
The
importance of
worldwide
access
and
of
addr essing
these
inequities
is
urgent.
With
this
in
mind,
the
Council
aims
to
contribute
positively
to
the
global
debate
and
activity
by framing
solutions
that
may
be
scalable
and
useful
in
many
settings,
as
well
as
by
identifying
ongoing
challenges
that
r emain
r esistant
to
solutions
in
order
to
focus new
cr eativity
on
finding
appr opriate
paths
forwar d.
Intr oduction
to
the
charge
of
the
W orld Economic
Forum
Global
Pr ecision
Medicine
Council
Pr ecision
medicine
is
a
term
widely
used
to
denote
the
application
of
scientific
pr ocesses,
technology
and
evidence
to
impr ove
the
car e
of
patients
by
optimizing the
therapeutic
benefit
of
interventions
to
tr eat,
manage,
cur e
and
ideally
pr event human
diseases.
Often,
this
involves
matching
a
sophisticated
understanding
of
disease
mechanisms
and
pathophysiology
with
highly
specific
diagnostic,
therapeutic
and/or
pr eventive
measur es
to
impr ove
clinical
outcomes
in
selected patients
or
populations.
Everyone
is
familiar
with
certain
aspects
of
pr ecision
medicine
based
on
the
ability
of
vaccinations
to
pr event
fear ed
infectious
diseases of
the
past,
such
as
smallpox
and
polio.
By
understanding
the
causative
infectious agent
and
by
“educating
and
activating”
the
human
immune
system,
pr ecision
medicine
has
been
able
to
conquer
many
serious
life-threatening
infectious
diseases.
Moder n
pr ecision
medicine
continues
to
deliver
cutting-edge
br eakthr ough
therapeutic,
diagnostic
and
pr eventive
tools
against
cancer , due
to
our
incr easing mechanistic
knowledge
of
what
makes
dif fer ent
types
of
cancer
“tick”.
By
understanding
that
a
mutation
in
a
cancer
cell
leads
to
an
uncontr olled
enzyme, the
drug
imatinib
(known
initially
as
Gleevec ®
in
the
United
States
and
as
Glivec ® in
all
other
countries)
has
r evolutionized
the
tr eatment
of
certain
leukaemias
and
other
cancers,
based
on
targeting
the
upr egulated
enzyme
in
the
cancer
cell.
This drug,
as
well
as
other
r emarkable
examples
of
targeted
therapy,
have
r eturned
patients
to
normal
lifespans,
and
access
is
easier
worldwide
now
that
patents have
expir ed
on
several
such
br eakthr ough
drugs.
Pr ecision
vaccines
against hepatitis
have
decr eased
the
incidence
of
liver
cancer , once
the
most
common
cancer
in
the
world.
Also,
thanks
to
r ecent
Nobel
Prize-winning
work, ther e
is
a
vaccine
against
the
viruses
that
cause
cervical
cancer
(the
human
papillomavirus). Making
cancer
a
less
common
and
less
fear ed
disease
is
an
admirable
goal,
which pr ecision
medicine
can
accomplish.
The
ability
of
pr ecision
medicine
to
help
with
emerging
infectious
diseases
is
also
becoming
mor e
apparent
during
the
2020 COVID-19
pandemic.
W e
know
fr om
host
genome
work that
some
people
are much
mor e
likely
to
suf fer
severe
symptoms,
even
in
the
absence
of
underlying health
conditions.
Being
able
to
find
these
people
through
simple
testing
would enable
them
to
be
vaccinated
pr eferentially
or
triaged
for
medical
attention
at
the
first
signs
of
illness.
The
ability
to
use
pr ecision
medicine
in
the
r esponse to
COVID-19
is
going
to
be
important
given
that
any
vaccine
is
likely
to
be
in
short
supply,
at
least
initially.
This
shows
that
while
the
r emarkable
advances
in
understanding
infectious
diseases
and
cancers
have
led
to
r evolutionary
changes in
patient
management
for
a
few
targeted
diseases,
the
impacts
have
br oad
relevance
to
global
health
and
many
aspects
of
health
and
wellness.
The
World
Economic
Forum
formed
the
Global
Pr ecision
Medicine
Council (the
Council)
to
identify
and
evaluate
challenges
to
the
implementation
of
pr ecision
medicine
in
dif fer ent
settings,
countries,
cultur es
and
socioeconomic envir onments.
The
benefits
of
pr ecision
medicine
in
terms
of
superior
outcomes are
incr easingly
clear , but ther e
are
challenges
to
the
equitable
and
widespr ead dissemination
of
pr ecision
medicine
tools,
technologies
and
solutions.
The
Council
aims
to
hel...