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Estudio de vigilancia científica como forma de actualizar las

2.2.1  CURRENT  LEGISLATION  

The  HFE  Act  (1990)  legislated  that  all  gametes  involved  in  donor  conception   treatment  were  to  be  from  anonymous  donors13.  In  2004,  the  Act  was  updated14  

and  donor  anonymity  was  removed;  consequently  when  donor-­‐conceived   children  born  after  1st  April  2005  turn  16  years  old  they  can  request  non-­‐

identifying  information  about  the  donor  such  as  ethnicity,  physical  

characteristics,  medical  history,  year  and  country  of  birth  and  the  number  and   gender  of  any  children  that  their  donor(s)  might  have  had;  and  from  age  18  then   they  can  request  identifying  information  about  their  donor(s),  such  as  their  full   names  and  last  known  address.  The  latest  amendment15  allows  donor-­‐

conceived  offspring,  aged  17  and  over,  to  access  identifying  information  about   donor  ‘siblings’  on  the  premise  that  both  parties  agree  to  this  information  being   shared.  The  updated  act  further  states  that  it  is  best  for  donor-­‐conceived  

children  to  be  told  about  their  conception  during  early  childhood,  based  on   evidence  of  emotional  damage  of  finding  out  later  in  life.  

 

2.2.2  REASONS  BEHIND  REMOVAL  OF  ANONYMITY  

 

To  encourage  disclosure  

It  has  been  suggested  that  donor  anonymity  supported  non-­‐disclosure  (Daniels   &  Taylor,  1993)  which  is  evidenced  by  parents  giving  anonymity  as  a  reason  for   non-­‐disclosure  (see  2.1.3).  Previously,  the  focus  was  on  adults  fulfilling  their   wish  to  have  a  child,  but  more  recently,  the  needs  of  donor-­‐conceived  offspring   are  attended  to.  

   

13  There  are  however  instances  where  donor-­‐offspring  have  made  contact  with  their  

donor  relatives  through  informal  channels  such  as  ‘The  Donor  Sibling  Link’  and  the   Donor  Conceived  Register  

14The  Human  Fertilisation  and  Embryology  Authority  (Disclosure  of  Donor  

Information)  Regulations,  2004)

To  encourage  early  disclosure  

As  stipulated  in  current  UK  law,  early  disclosure  is  now  deemed  to  be  in  the   child’s  best  interests.  This  was  based  on  growing  evidence  that  when  donor-­‐ conceived  offspring  are  told  about  their  conception  before  adolescence  and  in   gradual  stages  then  they  appear  to  accept  this  (see  2.1.4).  Another  benefit  is  that   it  removes  the  possibility  of  children  accidentally  discovering  that  they  were   conceived  differently,  which  as  discussed  (see  2.1.4)  can  have  negative   consequences.  

 

An  increasing  number  of  intended  parents  wanted  identifiable  donors  

Another  contributing  factor  was  the  increased  availability  of  fertility  treatment   for  non-­‐traditional  families  including  SMCs,  and  FCs,  who  now  form  a  significant   proportion  of  treatments  involving  the  use  of  donor  sperm  (section  1.2.2)  and   tend  to  prefer  identifiable  donors  over  anonymous  donors  because  it  provides   their  children  with  an  opportunity  to  know  more  information  about  their  donor   and  possibly  meet  them  in  the  future  (Scheib,  Riordan,  &  Rubin,  2003).  

 

To  provide  donor-­‐offspring  a  chance  to  know  their  donor  relatives  

Some  donor-­‐conceived  offspring  are  interested  to  know  information  about  their   donor  relatives  (Jadva  et  al.,  2009;  Scheib  et  al.,  2005)  to  give  them  a  fuller   understanding  of  themselves;  whilst  not  impossible  through  unconventional   avenues16  this  is  difficult  to  do  when  donors  remain  unknown.    

2.2.3     THE  IMPACT  OF  THE  LAW  CHANGE  ON  DISCLOSURE  

 

UK  legislation  now  encourages  disclosure  through  the  use  of  identifiable  donors   and  also  advises  parents  that  disclosure  is  best  (see  3.1.1).  It  does  not,  however,   impose  mandatory  disclosure,  so  parents  can  decide  whether  or  not  to  reveal   this  to  their  children.  As  explained  by  Ravitsky  (2010),    four  components  need   to  be  in  place  in  order  for  children  to  know  details  relevant  to  their  donor   conception.  The  first  three  aspects:  1)  right  to  full  medical  history,  2)  right  to   information  relevant  to  development  of  identity  and  3)  right  to  donor’s  identity,  

are  implemented  by  UK  legislation.  However,  these  are  only  possible  if  parents  

implement  the  fourth  aspect:  the  disclosure  of  donor-­‐conception.  It  has  now  

been  over  a  decade  since  the  removal  of  donor  anonymity,  but  little  is  known   about  the  impact  of  identifiable  donors  on  parents’  disclosure  decisions  in  the   UK.    

 

The  impact  of  identifiable  donors    

UK  Law  is  now  reflective  of  other  countries  that  support  openness  through  the   use  of  identifiable  donors.  Sweden  was  the  first  country  to  pass  legislation  about   disclosure,  since  then  other  countries,  including:  Austria,  Switzerland,  

Netherlands,  New  Zealand,  Norway,  Finland  and  Australia  (Western  Australia   and  Victoria  states)  only  offer  identifiable  donors  (Lalos  et  al.,  2007).  An  early   Swedish  study  found  that  only  one,  out  of  92  couples,  planned  to  disclose  when   they  had  used  anonymously  donated  sperm  (Milsom  &  Bergman,  1982).  In   1985,  Sweden  banned  anonymity  and  a  later  study  found  that  52%  of  parents   who  used  identifiable  sperm  donation  had  either  already  disclosed,  or  planned   to  do  so  (Gottlieb,  Lalos,  &  Lindblad,  2000).  It  cannot  be  concluded  whether  the   increased  number  is  due  to  the  use  of  identifiable  sperm,  but  it  does  suggest   that  in  Sweden,  parental  attitudes  towards  disclosure  changed  over  time.   However,  in  Belgium,  parents  who  had  conceived  using  donated  eggs  were  no   more,  or  less  likely  to  disclose  to  their  children  whether  an  anonymous  or   identifiable  donor  was  used  (Laruelle,  Place,  Demeestere,  Englert,  &  Delbaere,   2011).  Thus,  the  impact  of  identifiable  donation  on  disclosure  rates  is  

inconclusive.  

Only  one  study  (Freeman,  Zadeh,  Smith,  &  Golombok,  2016)  has  explored  the   impact  of  identifiable  donors  in  the  UK.  Semi-­‐structured  interviews  were   conducted  with  31  SMCs  and  47  heterosexual  mothers  in  a  couple,  who  had   children  aged  four  to  eight  years  old  conceived  using  identifiable  sperm  donors.   At  the  time  of  the  study  55%  of  SMC’s  and  36%  of  coupled  mothers  had  begun   to  disclose.  For  coupled  mothers,  the  disclosure  proportions  were  not  dissimilar   to  a  comparable  UK  study  using  anonymously  donated  sperm  which  identified  a   disclosure  rate  of  28%  at  aged  seven  (Readings  et  al.,  2011).  Therefore,  the  use  

of  identifiable  donors  does  not  appear  to  have  resulted  in  a  marked  increase  in   disclosure.  One  reason  for  this  could  be  that  parents  are  not  receiving  adequate   support  to  guide  them  through  the  disclosure  process  (see  3.1.4  for  full  

discussion),  and  because  a  formalised  system  of  disclosure  is  absent  (Frith,   2001).  

Overall,  although  some  studies  show  that  parents  who  used  identifiable  donors   are  more  inclined  towards  disclosure,  it  remains  unclear  exactly  if  and  how  the   use  of  identifiable  donors  has  shaped  these  trends,  and  if  indeed  parents  are   more  likely  to  disclose  if  they  have  used  identifiable  donors,  especially  in  the   context  of  ED/DD.