crispr/cas9: ethical implicationsand social...

39
CRISPR/CAS9: ETHICAL IMPLICATIONS AND SOCIAL REACTIONS Alessandro Blasimme, PhD Health Ethics and Policy Lab – Universität Zürich [email protected] @a_blasimme SUPRIO-Workshop 2016 Bern, 03.11.2016

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Page 1: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

CR

ISP

R/C

AS

9: E

TH

ICA

L

IMP

LIC

AT

ION

SA

ND

SO

CIA

L

RE

AC

TIO

NS

Ale

ssa

nd

ro B

lasi

mm

e,

Ph

D

He

alt

hE

thic

sa

nd

Po

licy

La

b –

Un

ive

rsit

ät

rich

ale

ssa

nd

ro.b

lasi

mm

e@

uzh

.ch

@a

_b

lasi

mm

e

SU

PR

IO-W

ork

sh

op

2016

Bern

, 03.1

1.2

016

Page 2: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Outli

ne

1.

Eth

ica

lis

su

es

2.

Go

ve

rna

nc

eis

su

es

3.

Inte

lle

ctu

al

pro

pe

rty

iss

ue

s

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

2

Page 3: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Outli

ne

1.

Eth

ica

lis

su

es

2.

Go

ve

rna

nc

eis

su

es

3.

Inte

lle

ctu

al

pro

pe

rty

iss

ue

s

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

3

Page 4: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

4

Page 5: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Natu

re,

26 M

arc

h 2

015

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

5

Page 6: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Eth

icalis

su

es:

co

ntr

a /1

•S

afe

ty i

ss

ue

s•

Off t

arg

et

mu

tatio

ns

•L

ab

ora

tory

co

nta

inm

en

t

•In

ten

tio

na

l e

co

syste

mic

alte

ratio

n (

ge

ne

dri

ve

)

•S

om

ati

c t

he

rap

y•

Mu

tatio

ns a

sso

cia

ted

with

po

lyg

en

ic d

ise

ase

s m

ay h

ave

pro

tective

effe

cts

a

ga

inst

oth

er

dis

ea

se

s

•G

erm

lin

e•

Hu

ma

n d

ign

ity:

the

in

teg

rity

of

the

hu

ma

n g

en

om

e is th

e b

asis

of

hu

ma

n d

ign

ity

(Ovie

do

Co

nve

ntio

n)

•U

np

red

icta

ble

co

nse

qu

en

ce

s o

n f

utu

re g

en

era

tio

ns (

pre

ca

utio

na

ry p

rin

cip

le)

•P

ub

lic o

utr

ag

e r

e g

erm

line

/em

bry

o/r

ep

rod

uctio

n m

ay in

th

e e

nd

blo

ck s

om

atic

the

rap

y a

s w

ell

•D

esig

ne

r’s b

ab

ies:

ge

ne

tic n

arc

issis

m, co

mm

od

ific

atio

n o

f ch

ildre

n

•R

ese

arc

h r

eq

uir

es d

estr

oyin

g e

mb

ryo

s

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

6

Page 7: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Eth

icalis

su

es:

co

ntr

a /2

•G

erm

lin

e(c

ontinued)

•C

om

eb

ack o

f e

ug

en

ics

•In

eq

ua

lity o

f a

cce

ss

•G

en

etic c

lassis

m –

syste

ma

tic a

dva

nta

ge

fo

r th

e g

en

etica

lly b

ette

r-

off

•N

o in

form

ed

co

nse

nt o

n th

e p

art

of th

e “

Cri

sp

r-ed

•R

ep

rod

ucti

ve c

ho

ices

•O

nly

use

ful if:

•O

ne p

are

nt

is h

om

ozygous f

or

dom

inant

monogenetic d

isease;

or

both

pare

nts

are

hom

ozygous f

or

for

recessiv

e m

onogenetic d

isease

•In

all

oth

er

cases,

IVF

+ P

GD

availa

ble

•H

om

ozygosity

for

dom

inant

genes is r

are

, m

ating b

etw

een t

wo

recessiv

e h

om

ozygous is im

pro

bable

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

7

Page 8: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Eth

icalis

su

es:

pro

/1

•S

afe

ty i

ssu

es

•W

e a

lre

ad

y h

ave

effic

ien

t w

ays to

co

nta

in a

nd

co

ntr

ol ri

sky

exp

eri

me

nta

tio

n (

no

Cri

sp

r-exce

ptio

na

lism

)

•H

um

an

dig

nit

y

•T

he

in

teg

rity

of th

e g

en

om

e c

an

no

t b

e a

no

rma

tive

re

fere

nce

po

int

(evo

lutio

n =

ch

an

ge

)

•S

om

ati

c a

nd

germ

lin

eth

era

py

•R

ese

arc

h in

th

is a

rea

ca

n s

ave

life

, h

en

ce

it is

a m

ora

l im

pe

rative

•T

he

arg

um

en

t fr

om

in

form

ed

co

nse

nt is

no

t va

lid w

ith

su

bje

cts

wh

o

ca

nn

ot co

nse

nt a

t a

ll

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

8

Page 9: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Eth

icalis

su

es:

pro

/2

•R

ep

rod

ucti

ve c

ho

ices

•N

atu

ral re

pro

du

ctio

n is a

lso

ris

ky fo

r b

oth

th

e m

oth

er

an

d th

e

offsp

rin

g.

•IV

F +

PG

D a

lso

ha

s its

ris

ks

•G

erm

line

ge

ne

ed

itin

g a

ims a

t h

avin

g b

ab

ies w

ith

th

e b

est p

ossib

le

ch

an

ce

s (

pro

cre

ative

be

ne

fice

nce

)

•C

on

sa

ng

uin

eo

us m

arr

iag

es a

re c

om

mo

n fo

r 1

/5 o

f th

e w

orl

d

po

pu

latio

n =

> m

atin

g b

etw

ee

n tw

o h

om

ozyg

ou

s fo

r a

re

ce

ssiv

e

ge

ne

is a

re

al p

ossib

ility

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

9

Page 10: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

10

Page 11: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Outli

ne

1.

Eth

ica

lis

su

es

2.

Go

ve

rna

nc

eis

su

es

3.

Inte

lle

ctu

al

pro

pe

rty

iss

ue

s

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

11

Page 12: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Govern

ance

•G

overn

ance r

efe

rs to the d

istr

ibute

d w

eb o

f actions a

nd

pro

cesses w

here

by a

socie

ty e

xert

s c

ontr

ol over

a g

iven

dom

ain

of associa

ted life.

•It

diffe

rs fro

m g

overn

ment

in t

hat it involv

es a

multip

licity

of sta

kehold

ers

and a

variety

of pra

ctices.

•G

overn

ance r

eaches b

eyond p

olit

ical in

stitu

tions a

nd

legal in

str

um

ents

of govern

ment,

to inclu

de m

ore

info

rmal

tools

of coord

ination,

such a

s•

se

lf-r

eg

ula

tio

n

•g

uid

elin

es

•co

de

s o

f co

nd

uct

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

12

Page 13: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

CR

ISP

R a

larm

s

Scie

nce,

3 A

pri

l 2015

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

13

Page 14: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Talk

ing g

overn

ance

Scie

nce,

3 A

pri

l 2015

In t

he

ne

ar

term

, w

e r

eco

mm

en

d t

ha

t ste

ps b

e t

ake

n t

o:

1)

[…]

2)

Cre

ate

fo

rum

s i

n w

hic

h e

xp

ert

s f

rom

th

e s

cie

nti

fic

an

d b

ioe

thic

s c

om

mu

nit

ies

ca

n p

rovid

e i

nfo

rma

tio

n a

nd

ed

uc

ati

on

ab

ou

t th

is n

ew

era

of

hu

ma

n b

iolo

gy,

th

e

issu

es a

cco

mp

an

yin

g t

he

ris

ks a

nd

re

wa

rds o

f u

sin

g s

uch

po

we

rfu

l te

ch

no

log

y f

or

a

wid

e v

ari

ety

of

ap

plic

atio

ns in

clu

din

g th

e p

ote

ntia

l to

tre

at

or

cu

re h

um

an

ge

ne

tic

dis

ea

se

, a

nd

th

e a

tte

nd

an

t e

thic

al, s

ocia

l, a

nd

le

ga

l im

plic

atio

ns o

f g

en

om

e

mo

dific

atio

n.

3)

[…]

4)

Co

nve

ne

a g

lob

all

y r

ep

res

en

tati

ve

gro

up

of

de

ve

lop

ers

an

d u

se

rs o

f g

en

om

e

en

gin

ee

rin

g te

ch

no

log

y a

nd

exp

ert

s in

ge

ne

tics, la

w,

an

d b

ioe

thic

s, a

s w

ell

as

me

mb

ers

of

the

scie

ntific c

om

mu

nity,

th

e p

ub

lic, a

nd

re

leva

nt

go

ve

rnm

en

t a

ge

ncie

s

an

d in

tere

st

gro

up

s,

to f

urt

he

r co

nsid

er

the

se

im

po

rta

nt

issu

es, a

nd

wh

ere

ap

pro

pri

ate

,

reco

mm

en

d p

olic

ies.

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

14

Page 15: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Ante

cedent

•1975 A

sil

om

ar

Co

nfe

ren

ce o

n R

ecom

bin

ant

DN

A

•P

au

l B

erg

an

d D

avid

Ba

ltim

ore

co

nve

ne

d 1

40

scie

ntists

•B

ioh

aza

rds o

f rD

NA

(la

b c

on

tain

me

nt)

•V

olu

nta

ry g

uid

elin

es to

en

su

re s

afe

ty (

se

lf-r

egu

latio

n)

•C

riticiz

ed

fo

r its la

ck o

f in

clu

siv

en

ess

•C

riticiz

ed

fo

r its n

arr

ow

te

ch

nic

al fo

cu

s

•M

ajo

r d

isa

gre

em

en

ts o

n a

pp

lica

tio

ns o

f b

iote

ch

no

log

y (

e.g

. G

MO

s)

•N

o m

ajo

r re

lea

se

-re

late

d in

cid

en

t

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

15

Page 16: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Talk

ing g

overn

ance

Volu

me X

XX

II,

Issue 1

, F

all

2015

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

16

Page 17: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Talk

ing g

overn

ance

Good

govern

ance

depe

nds

on

vis

ions

of

pro

gre

ss

that

are

co

llecti

vely

defi

ned

,

dra

win

gon

the

full

rich

ness

of

the

dem

ocra

tic

imag

inati

on

.

Even

wh

ere

there

are

calls

for

“b

road

pu

bli

cd

ialo

gu

e,”

these

are

co

nstr

ain

ed

by

exp

ert

acco

un

tsof

wh

at

ispro

per

(an

dnot

pro

per)

tota

lkabo

ut

inensu

ing

delib

era

tions.

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

17

Page 18: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Talk

ing g

overn

ance

Though

such

exerc

ises

purp

ort

tosatisfy

the

need

for

public

engagem

ent,

the

yfa

ilto

reach

the

po

or,

the

marg

inal,

an

dth

eso

cia

lly

exclu

ded

inm

eanin

gfu

lw

ays.

They

afford

little

opp

ort

unity

for

the

em

erg

en

ce

of

dis

sen

tin

gvo

ice

san

d

pers

pectives

that

ch

all

en

ge

exp

ert

s’im

ag

inati

on

s.

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

18

Page 19: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Talk

ing g

overn

ance

A1996

report

of

the

Nationa

lR

esearc

hC

ou

ncil

pro

pose

da

naltern

ative

appro

ach:

the

an

aly

tic-d

eli

bera

tive

mo

del.

Inth

ism

od

el,

the

move

ment

fro

mfa

ct-

fin

din

gto

inco

rpo

rati

ng

valu

eju

dg

men

tsis

no

tli

near.

Indem

ocra

cie

s,

the

pro

cess

of

un

ders

tan

din

gri

sk

req

uir

es

co

nsta

nt

revis

itin

g,

thro

ugh

delib

era

tion,

of

the

risks

fram

ed

and

the

questions

asked.

Refr

am

ed

questions

intu

rnla

yth

egro

un

dfo

rm

eanin

gfu

lfu

rther

analy

sis

an

dkeep

pu

bli

cs

en

gag

ed

in

the

pro

cess

of

go

vern

an

ce.

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

19

Page 20: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Inte

rnatio

nal S

um

mit

on H

um

an G

ene E

diti

ng

Wash

ingto

n D

C, 1-3

Dece

mber 2015

#G

en

eE

dit

Su

mm

it

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

20

Page 21: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Inte

rnatio

nal S

um

mit

on H

um

an G

ene E

diti

ng

Wash

ingto

n D

C, 1-3

Dece

mber 2015

1.

Basic

an

d P

recli

nic

al R

esearc

h.

Inte

nsiv

eb

asic

an

dp

recli

nic

al

rese

arc

his

cle

arly

ne

ede

d

and

sh

ou

ldp

roceed

,subje

ct

toappro

priate

leg

al

and

eth

icalru

les

and

overs

ight.

If,

inth

epro

cess

of

researc

h,

early

hu

man

em

bry

os

or

germ

line

cells

underg

ogene

editin

g,

the

mo

dif

ied

cell

s

sh

ou

ldn

ot

be

used

toesta

bli

sh

ap

reg

nan

cy.

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

21

Page 22: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Inte

rnatio

nal S

um

mit

on H

um

an G

ene E

diti

ng

Wash

ingto

n D

C, 1-3

Dece

mber 2015

2.

Cli

nic

al

Us

e (

res

ea

rch

& t

he

rap

y):

So

ma

tic

.

Th

ere

isa

ne

ed

tou

nd

ers

tan

dth

eri

sk

s,

su

ch

as

inaccu

rate

ed

itin

g,

an

dth

ep

ote

nti

al

be

ne

fits

of

ea

ch

pro

po

se

dg

en

etic

mo

dific

atio

n.

Be

ca

use

pro

po

se

dclin

ica

lu

se

sa

rein

ten

de

dto

affe

ct

on

lyth

ein

div

idu

al

wh

ore

ce

ive

sth

em

,th

ey

ca

nb

ea

pp

rop

ria

tely

an

dri

go

rou

sly

eva

lua

ted

wit

hin

ex

isti

ng

an

de

vo

lvin

gre

gu

lato

ryfr

am

ew

ork

sfo

rg

en

eth

era

py,

an

dre

gu

lato

rsca

nw

eig

hri

sks

an

dp

ote

ntia

lb

en

efits

ina

pp

rovin

gclin

ica

ltr

ials

an

dth

era

pie

s.

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

22

Page 23: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Inte

rnatio

nal S

um

mit

on H

um

an G

ene E

diti

ng

Wash

ingto

n D

C, 1-3

Dece

mber 2015

3.

Clin

ica

l U

se

: G

erm

lin

e.

[…]

Itw

ou

ldb

eir

res

po

ns

ible

top

roc

ee

dw

ith

an

yclin

ical

use

of

ge

rmlin

ee

ditin

gu

nle

ss

an

du

ntil

(i)

the

rele

va

nt

sa

fety

an

de

ffic

ac

yis

su

es

ha

ve

be

en

reso

lve

d,

ba

se

do

na

pp

rop

ria

teu

nd

ers

tan

din

ga

nd

ba

lan

cin

go

fri

sks,

po

ten

tia

lb

en

efits

,a

nd

alte

rna

tive

s,

an

d

(ii)

the

reis

bro

ad

so

cie

tal

co

ns

en

su

sa

bo

ut

the

ap

pro

pri

ate

ne

ss

of

the

pro

po

se

da

pp

lica

tio

n.

Mo

reo

ve

r,a

ny

clin

ical

use

sh

ou

ldp

roce

ed

on

lyu

nd

er

ap

pro

pri

ate

reg

ula

tory

ove

rsig

ht.

At

pre

se

nt,

the

se

cri

teri

ah

ave

no

tb

ee

nm

et

for

an

yp

rop

ose

dclin

ical

use

[…].

Ho

we

ve

r,a

sscie

ntific

kn

ow

led

ge

ad

va

nce

sa

nd

so

cie

tal

vie

ws

evo

lve

,th

eclin

ical

use

of

ge

rmlin

ee

ditin

gsh

ou

ldb

ere

vis

ite

do

na

reg

ula

rb

asis

.

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

23

Page 24: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Inte

rnatio

nal S

um

mit

on H

um

an G

ene E

diti

ng

Wash

ingto

n D

C, 1-3

Dece

mber 2015

4.

Go

ve

rna

nc

e.

Ne

ed

for

an

On

go

ing

Fo

rum

.[…

]T

he

inte

rna

tio

na

lc

om

mu

nit

ysh

ou

ldstr

ive

toe

sta

blis

hn

orm

sc

on

ce

rnin

ga

cc

ep

tab

leu

se

so

fh

um

an

ge

rmlin

e,

ino

rde

rto

dis

co

ura

ge

un

ac

ce

pta

ble

ac

tiv

itie

sw

hile

ad

va

ncin

gh

um

an

he

alth

an

dw

elfa

re.

Th

efo

rum

sh

ou

ldb

ein

clu

siv

ea

mo

ng

na

tio

ns

an

de

ng

ag

ea

wid

era

ng

eo

fp

ers

pe

ctive

sa

nd

exp

ert

ise

–in

clu

din

gfr

om

bio

me

dic

al

scie

ntists

,so

cia

lscie

ntists

,e

thic

ists

,h

ea

lth

ca

rep

rovid

ers

,p

atie

nts

an

dth

eir

fam

ilie

s,

pe

op

lew

ith

dis

ab

ilitie

s,

po

licym

ake

rs,

reg

ula

tors

,re

se

arc

hfu

nd

ers

,fa

ith

lea

de

rs,

pu

blic

inte

rest

ad

vo

ca

tes,

ind

ustr

yre

pre

se

nta

tive

s,

an

dm

em

be

rso

fth

eg

en

era

lp

ub

lic.

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

24

Page 25: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Fulfi

lled p

rophecie

s

•A

ware

ness r

egard

ing inclu

siv

eness,

but

expert

s c

learly

take the lead

•S

afe

ty a

nd e

ffic

acy a

s t

he fra

min

g t

hem

es

•S

cope lim

ited t

o h

um

an g

ene e

ditin

g

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

25

Page 26: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Beyond h

um

an g

ene e

diti

ng: gene d

rive

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

26

Page 27: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Beyond h

um

an g

ene e

diti

ng: gene d

rive

CR

ISP

R/C

as9 c

an b

e u

sed t

o s

pre

ad m

uta

tions/t

raits in

wild

type p

opula

tions o

f sexually

repro

ducin

g s

pecie

s.

This

techniq

ue c

an b

e u

sed t

o a

lter

wild

type p

opula

tions in

vie

w o

f specific

hum

an e

nds:

•E

.g. e

limin

atin

g m

osq

uito

-bo

rne

dis

ea

se

s (

ma

lari

a, d

en

gu

e),

reve

rsin

g p

esticid

e/h

erb

icid

e r

esis

tan

ce

, e

rad

ica

tin

g in

va

siv

e

sp

ecie

s, e

tc.

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

27

Page 28: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Gene d

rive

Genes t

hat are

more

lik

ely

to b

e inherite

d e

ven if th

ey

reduce t

he o

dds t

hat an o

rganis

m w

ill r

epro

duce.

Di C

arlo e

t al. 2

015

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

28

Page 29: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Beyond h

um

an g

ene e

diti

ng: gene d

rive

PN

AS

, D

ec

20

15

, V

ol.

11

2 n

o.

49

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

29

Page 30: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Beyond h

um

an g

ene e

diti

ng: gene d

rive

Na

t B

iote

ch

no

log

y, 7

De

c 2

01

5,

do

i:1

0.1

03

8/n

bt.

34

39

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

30

Page 31: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Talk

ing g

overn

ance

Sc

ien

ce

, 8

Au

gu

st

20

14

; V

ol.

34

5 I

ss

ue

61

97

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

31

Page 32: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Talk

ing g

overn

ance

Sc

ien

ce

, 8

Au

gu

st

20

14

; V

ol.

34

5 I

ss

ue

61

97

1.

Develo

p r

evers

al drives

2.

Monitor

effect on g

enetic d

ivers

ity

3.

Conta

in e

xperim

ents

4.

Monitor

pre

sence a

nd p

revale

nce o

f drives

5.

Evalu

ate

candid

ate

gene d

rives c

ase-b

y-c

ase

6.

Model delib

era

te m

isuse

7.

Ris

k-b

enefit

assessm

ent

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

32

Page 33: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Talk

ing g

overn

ance

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

33

Page 34: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Outli

ne

1.

Eth

ica

lis

su

es

2.

Go

ve

rna

nc

eis

su

es

3.

Inte

lle

ctu

al

pro

pe

rty

iss

ue

s

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

34

Page 35: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

35

Page 36: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

36

Page 37: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Gene d

rive g

overn

ance

thro

ugh

IP

Kevin

Esvelt, M

IT

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

37

Page 38: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

Conclu

sio

ns

•E

thic

ald

eb

ate

•F

ew

Cri

sp

r-sp

ecific

ne

w issu

es

•F

ocu

s o

n g

erm

line

mo

dific

atio

n

•G

overn

an

ce

deb

ate

•In

clu

siv

e p

ub

lic e

ng

ag

em

en

t in

vo

ke

d

•E

xp

ert

-ca

ptu

rea

nd

se

lf-r

eg

ula

tio

n

•In

tell

ectu

alP

rop

ert

yd

eb

ate

•D

isp

ute

on

go

ing

•E

ffe

cts

on

bo

thin

du

str

ial d

eve

lop

me

nta

nd

re

se

arc

h

A.

Bla

sim

me -

He

alth

Eth

ics a

nd

Po

licy L

ab

-U

ZH

Be

rn, 3

No

ve

mb

er

'16

38

Page 39: CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL ...suprio.ch/wp-content/uploads/2017/08/CRISPR-Blasimme...CRISPR/CAS9: ETHICAL IMPLICATIONSAND SOCIAL REACTIONS Alessandro Blasimme, PhD

TH

AN

KY

OU

FO

R Y

OU

RA

TT

EN

TIO

N!

Ale

ssa

nd

ro B

lasi

mm

e,

Ph

D

He

alt

hE

thic

sa

nd

Po

licy

La

b

SU

PR

IO-W

ork

sh

op

2016

Bern

, 03.1

1.2

016

ww

w.d

igit

ale

thic

s.c

h