Self-­‐tracking – health promo9on or narcissism?

19-­‐05-­‐16  

Self-­‐tracking    

–  health  promo9on  or  narcissism?  

•  Quan9fied  self  (QS)  movement  started  in  2007   •  >140  000  health  apps  worldwide  

•  Self-­‐trackers  Xmas  giI  of  the  year  2014  in  Sweden   •  Health  apps  now  in  the  basic  supply  of  many  

Ultrashort  on  the  state  of  art,  cont’d  

•  Sara  Riggare,  a  young  Parkinson  pa9ent     and  self-­‐monitoring  promotor  selected  as   the  most  influen9al  person  i  Swedish   medtech  

19-­‐05-­‐16  

•  New  technique  with  well-­‐defined  and  exci9ng  ethical   challenges  

•  No  previous  ethical  analysis   •  No  other  present  actors  

•  Target  group  including  the  young  

19-­‐05-­‐16  

”They  are  an  eclec9c  mix  of  early  adopters,  fitness  freaks,   technology  evangelists,  personal-­‐development  junkies,   hackers  and  pa9ents  suffering  from  a  wide  variety  of   health  problems.  ”  

2012  

•  Promo9ng  healthy  behaviour,  strenghtening  self-­‐ esteem,  new  approach  to  public  health  

•  Early  detec9on  of  disease  

•  Monitoring  and  allevia9ng  disease,  pa9ent  

healthcare?  

•  Narcissis9c  culture  –  narcissis9c   individuals  

•  The  monitoring  constantly  reminds   about  having  disease(s)  –  focus  of   life  shiIed  from  health  to  disease.       •  Overquan9fied  self  –  neuro9c  

behaviour    

•  Increasing  number  of  alarms,  most   of  them  false  posi9ve  (anxiety,   resource-­‐consuming)  

19-­‐05-­‐16  

Anton  Grunberg,  prize-­‐awarded  Dutch  author   Latest  novel  Het  Bestand  

Integrity,  responsibility,  resources  

•  Integrity:  Who  owns,  who  disposes?  Need  for   regula9on?  

•  Risk  for  hacking  healthcare  computer  systems    via   health  apps?  

(with  ethical  implica9ons)  

Do  they  have  in  common?  

19-­‐05-­‐16  

Ci9zen  science  based  on  self-­‐tracking:  New  ethical  issues  

•  Par9cipants:  Blurred  dis9nc9on  between  researchers   and  study  subjects    

•  Subject  to  the  Ethical  Review  Act?  Ethical  vegng   required?  

•  Who  is  in  control  of  the  databases?  How  is  the   integrity  of  the  par9cipants  protected?    

•  Risk  for  dissemina9on  of  non-­‐validated,  erronous,   manipulated  results  

(crowd-­‐sourced  science,  civic  science,  volunteer  monitoring,   networked  science)