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CRISPR/Cas 9 : to use or not to use? Prof. Effy Vayena, Health Ethics and Policy Lab, EBPI, UZH @effyvayena hGp://www.techinsider.io/theageofgeneLcallyengineeredanimalshasarrived20156

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CRISPR/Cas  9  :  to  use  or  not  to  use?    

Prof.  Effy  Vayena,  Health  Ethics  and  Policy  Lab,  EBPI,  UZH  @effyvayena    

hGp://www.techinsider.io/the-­‐age-­‐of-­‐geneLcally-­‐engineered-­‐animals-­‐has-­‐arrived-­‐2015-­‐6  

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 QuesLons  

•  Is  it  morally  permissible  to  engage  with  applicaLons  of  this  technology  (human,  animals,  plants)?  

•  How  do  *we*  judge  and  decide  that?  

•  What  do  we  do  between  now  and  when  we  have  a  decision?  

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Genome  edi)ng:  7  facts  about  a  revolu)onary  technology    @Nature  

1.  Just  one  published  study  describes  genome  ediLng  of  human  germ  cells.    2.The  law  on  ediLng  human  germ  cells  varies  wildly  across  the  world.  3.You  don’t  have  to  be  a  pro  to  hack  genomes.  4.Cas9  is  not  the  only  enzyme  in  town.  5.  Pigs  are  on  the  front  line  of  genome-­‐ediLng  experiments.  6.Gates,  Google  and  DuPont  want  a  piece  of  the  genome-­‐ediLng  acLon.  7.  The  CRISPR–Cas9  system  is  at  the  centre  of  a  patent  row.  

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Nature  526,  18  (01  October  2015)  doi:10.1038/nature.2015.18448  

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hGp://www.technologyreview.com/news/542616/first-­‐gene-­‐edited-­‐dogs-­‐reported-­‐in-­‐china/  

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David  Scharf/Corbis  

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“GMO  Sapiens”  

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On  IVF    

"All   hell   will   break   loose,   poliLcally   and  morally,  all    over  the  world.”    James  Watson,  quoted  in  “The  Embryo  Sweepstakes,”    New    York  Times,  September  15  1974  

 

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”  If  CRISPR  helps  unravel  the  mysteries  of  auLsm,  contributes  to  a  cure  for  a  form  of  cancer,  or  makes  it  easier  for  farmers  to  grow  more  nutriLous  food  while  reducing  environmental  damage,  the  fears,  like  the  many  others  before  them,  will  almost  certainly  disappear.”    The  New  Yorker  

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“I  have  never  said  this  in  public,  but  it  will  show  you  where  my  psyche  is,”  she  said.  “I  had  a  dream  recently,  and  in  my  dream  [X]   had   come   to   see   me   and   said,   ‘I   have   somebody   very  powerful  with  me  who  I  want  you  to  meet,  and  I  want  you  to  explain  to  him  how  this  technology  funcLons.’  So  I  said,  Sure,  who  is  it?  It  was  Adolf  Hitler.  I  was  really  horrified,  but  I  went  into   a   room   and   there   was   Hitler.   He   had   a   pig   face   and   I  could  only  see  him  from  behind  and  he  was  taking  notes  and  he   said,   ‘I   want   to   understand   the   uses   and   implicaLons   of  this  amazing  technology.’  I  woke  up  in  a  cold  sweat.  And  that  dream   has   haunted   me   from   that   day.   Because   suppose  somebody  like  Hitler  had  access  to  this—we  can  only  imagine  the  kind  of  horrible  uses  he  could  put  it  to.”  

Jennifer  Doudna  quoted  in  “The  Gene  Hackers”,  The  New  Yorker,  Nov.  16  2015    

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Key  arguments    

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IllustraLon  by  Todd  St.  John    

 *“known  unknowns  and      unknown  unknowns”    Nature  of  risk      ProporLonal  to  benefit      

 Is  it  morally  jusLfied  to  take  the  risk    

in  light  of  so  many  unknowns?    

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«we   are   human   because   of   the   interplay   of   many  biological,   historical,   and   cultural   determinants,  which  preserve  the  feeling  of  our  fundamental  unity  and  nourish  the  richness  of  our  diversity.  This  is  why  the   human   genome   is   one   of   the   premises   of  freedom   itself   and   not   simply   raw   material   to  manipulate   at   leisure.   […]  What   is   the   heritage   of  humanity   entails   sharing   both   responsibiliLes   and  benefits»  UNESCO  

Is  it  morally  permissible  to  modify  the  human  genome?    

 

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Human  Nature  

“IntervenLons  on  the  human  genome  should  be  admiGed  only  for  prevenLve,  diagnosLc  or  therapeuLc  reasons  and  without  enacLng  modificaLons  for  descendants.”  The  alternaLve  would  “jeopardize  the  inherent  and  therefore  equal  dignity  of  all  human  beings  and  renew  eugenics”        

             hGp://www.un.org/apps/news/story.asp?NewsID=52172#.VlxXzaI9Vpg”  

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Nuffield  Council  of  Bioethics    

“Human  beings  have  two  basic  kinds    of    emoLonal    relaLons    to    nature:    graLtude    and    a    sense    of    peace,    on    the    one    hand,  terror  and  sLmulaLon  on  the  other.”  Bernard  Williams  

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“Human  nature  is  what  gives  us  a  moral  sense,  provides  us  with  the  social  skills  to  live  in  society,  and  serves  as  a  ground  for  more  sophisLcated  philosophical  discussions  of  rights,  jusLce  and  morality"    

Francis  Fukuyama  

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•  “...  Only  with  geneLc  engineering  aiming  at  selecLon  and  at  the  modificaLon  of  traits,  as  well  as  the  research  required  for  such  goals  and  geared  to  future  geneLc  treatment...  do  challenges  of  a  new  order  arise.  They  imply  the  licence  to  control  the  physical  basis  which  “we  are  by  nature”...  this  extension  of  control  of  our  “inner”  nature  is  disLnguished  from  similar  expansions  of  our  scope  of  opLons  by  the  fact  that  it  “changes  the  overall  structure  of  our  moral  experience.”    

   Habermas  J  (2003)  The  future  of  human  nature  (Cambridge:  Polity)    

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The  slippery  slope  

hGp://sciencevibe.com/2015/03/20/geneLcally-­‐designed-­‐babies-­‐are-­‐within-­‐reach-­‐should-­‐we-­‐do-­‐it/  

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The  consent  of  those  to  be  born  

"ethical  issues  presented  by  altering  the  germline  in  a  way  that    affects  the  next  generaLon  without  their  consent”  Francis  Collins,  NIH      

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Become  beGer  

•  Moral  obligaLon  to  make  beGer  humans  (Savulescu)  

 •  Is  it  morally  superior  to  “naturally”  pass  on  mutaLons  that  cause  suffering?  (Evans)  

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To  date,  the  weight  of  reasons  favours  conLnuing  gene  ediLng  research,  rather  than  banning  it.  Those  who  believe  that  gene  ediLng  research  should  be  banned  or  discouraged  need  to  explain  why  this  technology  needs  to  be  treated  differently  to  other  technologies  and  other  reproducLve  pracLces.  Moreover,  they  need  to  explain  how  the  expected  risks  outweigh  the  expected  benefits,  and  why  the  risks  cannot  be  appropriately  managed  with  more  specific  legislaLon.    

Savulescu  et  al.  Protein  Cell.  2015  Jul;  6(7):  476–479.  

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 ”just  as  jusLce  delayed  is  jusLce  denied,  so  therapy  delayed  is  therapy  denied."  (John  Harris)  

hGp://www.theguardian.com/science/2015/dec/02/why-­‐human-­‐gene-­‐ediLng-­‐must-­‐not-­‐be-­‐stopped  

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PragmaLc  arguments  

•  DemocraLzaLon  of  gene  ediLng    •  Someone  will  do  it    •  Bioterrorism    •  Public  outcry    •  Harsh  regulatory  response    

hGp://www.techinsider.io/the-­‐age-­‐of-­‐geneLcally-­‐engineered-­‐animals-­‐has-­‐arrived-­‐2015-­‐6  

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hGps://www.youtube.com/watch?v=TWthRz-­‐0T18  

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•  PrecauLonary  principle    

•  Liberal  self-­‐regulaLon    

•  Proceed  with  cauLon  and  oversight  

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Moratorium?  Lanphier  et  al.  (2015)  state:  In  our  view,  genome  edi9ng  in  human  embryos  using  current  technologies  could  have  unpredictable  effects  on  future  genera9ons.  This  makes  it  dangerous  and  ethically  unacceptable.  Such  research  could  be  exploited  for  non-­‐therapeu9c  modifica9ons.  

A  voluntary  moratorium  in  the  scienLfic  community  could  be  an  effecLve  way  to  discourage  human  germline  modificaLon  and  raise  public    awareness  of  the  difference  between  these  two  techniques.    

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The  process    

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“But  such  a  consensus  would  only  be  the  start  of  a  broader  discussion,  Cicerone  cauLons.  Eventually  the  health  industry,  disease  lobby  groups,  members  of  the  public  and  governments  of  the  many  naLons  involved,  will  need  to  feed  into  decisions.  “As  much  work  as  we’ve  put  into  this  meeLng,”  Cicerone  says,  “it  really  is  only  a  first  big  step.”  

Nature  doi:10.1038/nature.2015.18879  

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•  There  will  be  reasonable  disagreement  on  gene  ediLng.  

•  Public  debate  must  take  place,  and  we  have  an  obligaLon  to  enable  and  facilitate  it.    

•  This  debate  is  both  scienLfic  and  societal.  •  PrecauLon  vs  permissive  is  not  the  only  way  to  resolve  this  issue.  Need  more  granularity.  

•  CauLon  is  prudent,  so  is  being  imaginaLve.    •  InnovaLon  that  contributes  to  common  goods  is  valuable.  

•  A  global  governance  model  (so~  law)  would  be  a  good  starLng  place.