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Судебное дело "Алина Саблина против тайной трансплантации органов"


Саблина и другие против России: ответ заявителей на меморандум властей России

 

05.07.2017

 

   Third Section

   European Court of Human Rights

   Council of Europe

   F-67075 Strasbourg CEDEX

   France

                                                   BY E-TRANSMISSION ONLY

   30 June 2017

                                                    Legal representative:

                                                             Anton Burkov

                                                           SROO Sutyajnik

                                           620075, Russia, Yekaterinburg,

                                                      Turgenev Str., 11-1

                                                             +79161250593

                                                   anton.burkov@gmail.com

   Sablina and Others v. Russia

   No 4460/16

   Applicants' memorandum in reply to the Russian Government's memorandum

    1. The  applicants  would  like  to  submit  their  comments  on  the
       memorandum provided by Agent of the Russian Federation.
    2. Facts.  First of all, please accept some corrections of facts that
       shall be made in STATEMENT OF FACTS.

    1. Page  1.  "The third applicant lives in Galdey". The name "Galdey"
       shall be spelled as "Gadaley" (Гадалей).
    2. Page  1.  "On  11  January  2014  Ms  A.S.  was hit by a car while
       crossing the street, sustained very serious injuries and fell into
       a  coma."  Ms  Alina  Sablina  was  crossing  the  street on zebra
       crossing. This fact has been established by a court. Although this
       fact has no influence on the outcome of the current case, it keeps
       a good memory of Ms Alina Sablina.
    3. Page 2, paragraph 1. "On 17 January 2014 they arrived again at the
       hospital, but were not allowed to see Ms A.S. because she had been
       moved to an intensive care ward." Ms Alina Sablina had been in the
       intensive  care  ward  from  the  very  first day at the hospital.
       Therefore,  moving Ms Alina Sablina to the intensive care ward was
       not  the  reason for not allowing parents to see Ms Alina Sablina.
       Alina's  parents,  including  the  applicant  Elena  Sablina, were
       allowed to see Alina in intensive care ward on 13-16 January 2014.
       This  was established by Zamoskvoretskiy district court of Moscow.
       However, on the 17 January 2014 they were refused access to Alina.
       The  reason  is  unknown.  Applicants claimed that Alina was being
       prepared  for  organ  removal  or already dead. We ask the ECHR to
       remove   the   following   part   from  this  contested  sentence:
       "...because she had been moved to an intensive care ward."
    4. Page 2, paragraph 2. "Despite the treatment she received Ms A.S.'s
       condition  deteriorated and on 17 January 2014 at 11.40 p.m. brain
       death  was  recorded. According to official records, her relatives
       were  notified  immediately about her death. The applicants do not
       contest  that  they  were  informed  but submit that they were not
       provided  with  details  about  the circumstances and cause of her
       death."  Applicants  indeed  argue that Elena Sablina has not been
       notified  about  her  death (See in Annex 16 to the Application No
       4460/16  -  "Civil Action (as amended 11.02.2015)"). It was one of
       the major points of the lawsuit. We ask this Court to mention that
       "The applicants contest that they were informed and that they were
       provided  with  details  about  the circumstances and cause of her
       death."
    5. Page  2,  paragraph  3.  "On 18 January 2014 the heart and kidneys
       were removed from Ms A.S.'s body." At the trial applicants claimed
       and  it  was not contested by defendants and it was established by
       the  courts  that  6  organs  were  removed  and only 2 (heart and
       kidneys)  were  recorded  in  the  Act  of organ removal. Four (4)
       organs  went  missing  from  medical  record  -  the Act of organs
       removal. We ask the Court to mention the following: "On 18 January
       2014  six  organs,  including  the heart and kidneys, were removed
       from  Ms  A.S.'s body. Four of the six organs were not recorded in
       the Act of organs removal."
    6. Page  2,  paragraph 5, sentence 2. "The forensic report stated, in
       particular,  that  a  sterno-laparotomy  had been performed on the
       body  and  that  certain  organs  had  been removed." The Forensic
       Report,  No.  133/21,  11.02.2014  was clear on the list of organs
       removed  and  recorded. These were six organs removed in total and
       only  two organs (heart and kidneys) recorded in the Act of organs
       removal,  four  organs (part of aorta, inferior vena cava, adrenal
       gland,  and  a  piece  of  the  lower lobe of the right lung) went
       missing  from  the  Act  of  organs  removal (Forensic Report, No.
       133/21,  11.02.2014.  Annex  4 to the Application No 4460/16). The
       applicants'  would  like to ask this Court to mention in the facts
       exactly what the forensic report stated.
    7. Page   3,   paragraph   3.  "The  applicants  then  brought  civil
       proceedings  against  the  Moscow  City  Health Department and the
       medical  institutions  involved  in  the  organ removal before the
       Zamoskvoretskiy  District  Court  of Moscow ("the District Court")
       seeking  compensation  of  non-pecuniary  damage". Applicants only
       sued hospitals.
    8. Page  9,  paragraph  2.  "The  applicants  further submit that the
       participation  of  a public prosecutor in those proceedings on the
       defendants'  side  breached  the  principle  of equality of arms."
       Applicants claimed that participation of a state prosecutor in the
       dispute  resolution  between private parties in general, no matter
       on  which  side,  is  a violation, except in circumstances where a
       genuine  state  interest is at stake, which was not the case here.
       The  mere  fact of a state prosecutor present in private case is a
       violation of a fair trial. It is also very important to mention in
       the  summary  of  facts  that  the  prosecutor  only  read out her
       conclusion  on  the case without being present during the entirety
       of  hearing  which  lasted  all day on 6 April 2015 (see point 19,
       part E "Statement of the facts", Application No 4460/16).
    9. Furthermore,   the   following   complaint  went  missing  in  the
       "COMPLAINTS"  part - the complaint under Article 6 that applicants
       were  denied  to  cross  examine  core witnesses of the case - the
       transplantologists who removed Ms Alina Sablina's organs.



   Comments on Government's memorandum.



   General Comments.



   After  a road accident on 11 January 2014, Alina Sablina lay in a coma
   for  six  days.  Her  parents  were  with  her at Moscow City Clinical
   Hospital  No.  1  (the hospital) from the day after the accident until
   the  day  before  her death on 17 January 2014. Only a month after the
   funeral  did  her  parents  find  out  that they buried their daughter
   without  six  of her organs. While filling out paperwork in connection
   with the criminal case against the driver who caused the accident, her
   mother  came across a forensic report that detailed the removal of her
   daughter's organs at the hospital.



   Another  shock  came  with  the  news  that  only two -- the heart and
   kidneys  --  of  the  six organs removed were actually recorded in the
   list  of organs removed. Four organs -- part of her aorta and inferior
   vena  cava,  her  adrenal  gland, and a piece of the lower lobe of her
   right  lung  -- were missing from the body and from the list of organs
   removed.



   Alina  never  expressed  her  consent  to  donate her organs^. Alina's
   parents  have  never been informed about planned organ transplantation
   and  were  not  asked  for  consent of Alina or their consent. This is
   despite  their constant physical presence at the hospital and numerous
   discussions  with  the  hospital's doctors during six long days at the
   intensive therapy unit.



   The  Federal  Act "On Transplantation of Human Organs and/or Tissues",
   dated 22 December 1992 (the 1992 law), is a poorly written, three-page
   text.  Article  8  of the 1992 law establishes an artificial (imputed)
   presumption of consent on the part of an individual or close relatives
   to   the   post-mortem   removal   of   the   deceased's   organs  for
   transplantation.  The  consent  is  artificial (imputed) because it is
   presumed  even  when  close  relatives  are  present at a hospital and
   resuscitators  can  approach  and ask relatives for consent. Yet while
   doctors  approach  relatives  to  inform  them of the condition of the
   patient,  they  do  not  inform  relatives  of  organ removals already
   planned  for  transplantation and therefore do not ask for consent. At
   the same time same doctors inform transplantologists of the "potential
   donor"  present  at  the  intensive  care  ward.  This is exactly what
   happened  in  the  Case  of Alina Sablina which was established by the
   Zamoskvoretskiy District Court of Moscow.



   Article 8 provides that:

   The removal of organs and (or) tissues from a corpse is not allowed if
   the  health  care institution at the time of removal was informed that
   this   person  during  his  life  or  his  close  relatives  or  legal
   representative  stated their disagreement to removal of his organs and
   (or) tissues after death for transplantation to a recipient.

   10. The  key  provision  in this Article is that relatives must inform
       the  medical institution about their attitude regarding removal of
       organs  from  a  corpse. Instead of the medical institution, which
       plays  a passive role, the close relatives of the patient must act
       and  inform  the  medical  institution of their objection to organ
       removal,  as  a  rule, without any knowledge of pre-existing plans
       for  organ  removal,  and  therefore cannot freely make or express
       their decision.
   11. The  problem,  therefore, is not presumed consent as such but lack
       of  an  obligation  for doctors to actually inform close relatives
       about a planned organ removal. This unawareness subsequently turns
       into   severe  moral  suffering  for  the  relatives  who  end  up
       discovering  the  truth. According to the Convention, ignorance of
       relatives'  feelings  (i.e.  approaching  them with information on
       deteriorating  health  conditions  but  failing  to inform them of
       organ   removal   already   planned)   and   ignorance   of  their
       decision-making  power  regarding organ removal violates the right
       to  private  and family life (Petrova v. Latvia)^ and even amounts
       to inhuman and degrading treatment (Elberte v. Latvia)^.
   12. In Alina's case, medical personnel had not informed her parents of
       the  planned  organ removal during any of their twice daily visits
       to  the  hospital  over  the  six  day  period that Alina spent in
       intensive  care.  During  this time the head of the intensive care
       unit  of the hospital did inform the Moscow Coordination Centre of
       Organ Donation^ about a "potential donor", Alina Sabina. According
       to  the  testimony of the head of the intensive care unit recorded
       in  the Zamoskvoretskiy District Court's minutes, this occurred on
       the  second  day  after Alina's arrival at the hospital, four days
       before  her death (see Annex 25 to the Application No 4460/16). On
       all four days doctors spoke to Alina's parents about the declining
       health  condition of their daughter. Therefore the parents did not
       and  could  not make any decision on organ donation and inform the
       hospital  of their decision. Consent could not be presumed in such
       a  situation.  The ability of doctors to approach the parents, but
       failure  to do so, makes presumed consent artificial (imputed) and
       leads to a violation of the parents' rights under the Convention.
   13. The  system  does  not  provide  a  mechanism  for expressing such
       consent  in  advance or at the moment of death and for documenting
       it.  Today  the  only  opportunity  to establish consent is to ask
       close  relatives  when  the  worst  is  already  happening  or has
       happened.  However,  doctors can somehow ignore relatives and keep
       them uninformed regarding organ removal.
   14. The  applicants  want  to  stress  that secret organ harvesting is
       practiced systematically in Russia. Every case of organ removal is
       simply  carried  out  without  the  consent  of  a  donor or their
       relative(s).  The  reason  for small number of such cases known to
       the  public or reached the courts is that organ removal is carried
       out  in  secret.  Therefore relatives are unaware of the fact that
       organs  were  removed.  Therefore  they  buried  their  loved ones
       without some organs not knowing the latter.
   15. Preliminary  consent.  The  fact that there is no system of asking
       for consent during the lifetime of a donor is not contested by the
       Government.  The  absence  of such a system in Russia is seen from
       the analysis of the 1992 law.
   16. Post mortem consent.
   17. Russian  doctors  openly  confirm  that  they  do not inform close
       relatives  of  the  planned  organs  removal. Testimonies given by
       doctors  involved  in  the  process  of organ removal confirm that
       ignoring the wishes of close relatives is not an isolated incident
       but  rather  part  of a general practice following the 1992 law on
       transplantation^.
   18. On  a  number  of  occasions  doctors  confirmed that they are not
       obliged  to  ask  for  consent from relatives or inform them about
       planned     organ     removal.     Igor    Loginov,    intensivist
       (анестезиолог-реаниматолог)  of  the  Saint-Petersburg  Center  of
       Organ  and Tissue Donation (Центра органного и тканевого донорства
       Санкт-Петербурга)   on   the   23:20  minute  of  the  documentary
       "Transplantology.  Challenge  to  the  Death." ("Трансплантология.
       Вызов смерти.") said that: "We actively are not obliged to ask for
       consent   of   relatives"   ("Мы   активно   спрашивать   согласия
       родственников не обязаны").^
   19. Admissibility.
   20. Government's  position.  The  Government mentioned that on 10 July
       2014  the  applicants has already applied to the ECHR (Application
       no. 52859/14) and this application was ruled inadmissible.

    1. Applicants'  position.  Application  no  52859/14 was filed on the
       same  facts  but  before  exhausting  domestic  remedies.  In this
       application  we  argued  that  there  were  no  effective remedies
       available,  therefore  it  was filed before exhaustion of domestic
       remedies.  Apparently  not  accepting  the applicants' argument on
       lack  of  effective domestic remedies (decision on inadmissibility
       is  not  clear  about  specific  reasons),  this  Court  ruled the
       application  no  52859/14  inadmissible on 29 January 2015. During
       (not  after decision of inadmissibility as Government mentioned in
       the  memorandum)  consideration of Application no 52859/14 by this
       Court,  applicants  went  to  national  courts to exhaust domestic
       remedies  be  they  as  ineffective as they proved to be. This was
       done  particularly  due  to  the  representative of the applicants
       envisaged  the  inadmissibility of the application no 52859/14 and
       also  because  the  need of discovery of facts through litigation.
       After  going  through all the Russian courts applicants applied to
       the   ECHR   within  the  6-month  time  limit.  And  this  second
       application No 4460/16 is now before the ECHR.
    2. All these facts were provided to the ECHR by the applicants in the
       Application  No  4460/16  -  see  point  44  on  page  13  of  the
       Application  No 4460/16 and Annex 44 "ECHR's letter of 29.01.2015"
       to the Application No 4460/16.



   Government's  position.  Government  said that application to national
   courts  with  civil  case is not an exhaustion of domestic remedies as
   the  time  limit  for civil cases is not set, it can be brought at any
   point in time and that it will not lead to criminal investigation just
   to compensation.

    1. Applicants'   position.  The  reason  of  the  sufferings  of  the
       applicants is in the 1992 law and its application by medical staff
       and law enforcement organs, including the courts, particularly the
       Russian  Constitutional Court. Deriving from this, the goal of the
       applicants  is  to  challenge  the  legislation  and the way it is
       implemented  so  that  no secret organ harvesting ever takes place
       again.   Civil   lawsuit  leading  to  the  complaint  before  the
       Constitutional  Court  was  the only presumably effective domestic
       remedy  available to the applicants which they pursued accordingly
       and in due course.

   QUESTION 1

   22. Government's  position.  The  Government  argues that there was no
       violation  of Article 8. The Government argues that relatives have
       the  burden  of informing the hospital of any objections regarding
       organ  removal,  rather than putting on hospitals burden to inform
       parents of planned organs removal, and seek consent.

    1. Applicant's'  position.  If  we  look at Article 8 of the 1992 law
       through  the  lenses  of  Article  8  of  the  Convention as it is
       interpreted  in  Petrova  v.  Latvia and Elberte v. Latvia, we see
       that  1992 law contradicts to the principle of clarity of the law.
       Paragraph 96 of Petrova v. Latvia states:

   "While  Latvian  law  set out the legal framework allowing the closest
   relatives  to  express  their  wishes in relation to organ removal for
   transplantation  purposes,  it  did not define with sufficient clarity
   the  scope of the corresponding obligation or the discretion conferred
   on medical practitioners or other authorities in this respect."

    2. The  situation in this case is identical. The rule of Article 8 of
       the  1992  law  is  not  clear  enough  for the close relatives to
       follow.  Under  Article 8 of the 1992 law relatives are obliged to
       inform of objection to organs removal without any knowledge of the
       planned  removal of organs. This rule of the 1992 law is not clear
       because it contains a trap for relatives in general and applicants
       to  this  case  in particular. The applicant Elena Sablina did not
       show  any  objection  to organs removal from Alina Sablina because
       she  had no information from the hospital regarding organs removal
       of   her   daughter   Alina,   planned   by   the   hospital   and
       transplantologists  for  at least 4-5 days. She had no information
       (no   access   to  information)  about  the  subject  of  possible
       objection.
    3. In  the present case, it remains unclear how the "presumed consent
       system",  as  established  under  the  Russian  law,  operates  in
       practice  in  the  circumstances  in  which  the  applicants found
       themselves,  whereby  they  had  certain  rights  as  the  closest
       relatives  but  were  not  informed  - let alone provided with any
       explanation  -  as  to  how and when these rights might have to be
       exercised.



   Government's  position.  The  Government  says  that relatives have to
   prove that they expressed objection.

    1. The  Government  omits the general rule that no one can express an
       objection  to  what  is  unknown. The applicant Elena Sablina says
       that  she was not informed of the planned organ removal, therefore
       she could not express her attitude regarding unknown fact.



   The   Government   considers   that   publication   of   the   law  on
   transplantation  of  organs  is  enough for relatives to express their
   attitude towards organs removal.

    1. This  means that the only way of knowing the fact of planned organ
       removal  is  to guess that organs will be removed according to the
       1992  law.  Therefore  the Government's argues that publication of
       the  1992  law  is  enough,  that there is no need to inform close
       relatives  of  the  potential  donor of planned organ removal is a
       legal  trap.  This  is  how  the Government understand presumptive
       consent.  In  practise  application  of  Article 8 of the 1992 law
       makes consent imputed (вмененное) consent, not presumed.



   Government's  position  (Points  23-24).  Some changes to the 1992 law
   were  made  after  4  December  2003  (first  decision  of the Russian
   Constitutional  Court  in  which  it ruled for "secret" organ removal,
   suggesting  minor  changes  to the 1992 law). The Government said that
   under  the  changes  to  the  1992  law  relatives'  consent  could be
   expressed in the same way as donor's.

    1. Applicant's'  position.  The  changes have not made any difference
       and  have  not  prevented secret organ removal from Alina Sablina.
       There  is  no  procedure in place according to which donors (those
       under Russian jurisdiction) or their relatives could express their
       consent.  Such mechanism simply does not exist. The Government did
       not  prove  that  it  exists.  The  Government provided no data (a
       number of consents recorded) which demonstrates that the mechanism
       is in place and works.



   Government's  position  (points  27-28). Russian system corresponds to
   international practice of presumed consent.

    1. Applicant's'  position.  None  of the existing systems of presumed
       consent in the world allows situations where consent is not sought
       at all. Only Russia has a system where no consent is sought during
       the  lifetime  of  donors,  where  no  consent is asked from close
       relatives  of  the  donor  after his or her death. For example, in
       Spain,  the  most successful State with a presumed consent system,
       presumed  consent means asking consent when possible, for example,
       when  parents  of  the  potential  donor  are available to provide
       consent  for  a period of maximum 5 days during which the donor is
       at the intensive care ward. In Latvia, the presumed consent system
       has been changed in the aftermath of Petrova v. Latvia and Elberte
       v.  Latvia  cases.  The system in Latvia now function in a similar
       fashion  as  the  spanish model. In Russia, presumed consent means
       not asking for consent at all, even in the situations when parents
       are  available to talk to during 5 days. So it is not presumed but
       "imputed" (вмененное) consent.



   Government's  position  (point  30)  - "applicants admitted that Alina
   Sablina  did  not  express  disagreement  on  the question on possible
   removal  of  her organs in case of death", "applicants did not provide
   any evidence that they objected to removal".

    1. Applicants'  position.  This case is not only about whether wishes
       of  Alina  Sablina were followed. This case is about sufferings of
       the  applicants due to the fact that doctors in the intensive care
       ward  failed  to inform Alina's parents of planned organs removal,
       failed  to  ask  Alina's  parents  if Alina has ever expressed her
       consent to organ donation or if Alina's parents consent to Alina's
       organ  donation.  This case is about the 1992 law allowing doctors
       to  remove  organs in secret from close relatives (parents) of the
       donor and sufferings which is caused by this law.



   Government's  position  (point 32). The 1992 law on transplantology of
   organs was published and mass media informed many about the 1992 law.

    1. Applicants'  position.  The  1992  was published long before Alina
       Sablina's  birth. This fact objectively prevented her from reading
       this law.
    2. Applicants  point  out to two social surveys on this matter - both
       observed little knowledge of the population.
    3. First report was run online by NGO Sutyajnik - ОТЧЕТ о результатах
       социологического исследования <<Трансплантация (пересадка) органов
       умерших  пациентов  без  их прижизненного согласия или согласия их
       близких  родственников>>  (Report  on  the results of sociological
       research   "Transplantation  (removal)  of  organs  from  deceased
       patients  without  their consent in their lifetime, or the consent
       of  their  relatives").  (Report is attached - see Annex 1 to this
       memorandum).^  The vast majority of population (62.3 per cent) did
       not  know  anything  about  the fact that doctors may remove their
       organs  without their consent in his/her lifetime consent (page 32
       of the NGO Sutyajnik's report).
    4. The  second  sociological  report led to the following conclusion:
       "The  analysis  of  the  data showed that organ donation and organ
       transplantation   are   subjects   which  are  quite  complex  and
       unfamiliar to respondents." (see Page 45 of the Report, Annex 2)^.



   Government's  position  (point  37).  Draft  law on organ donation was
   introduced by the Russian Ministry of Health to the Russian Government
   for approval.

    1. Applicants'   position.   On   12   April  2017  Gabbasova  Lialia
       Adygamovna, assistant to the Russian Minister of Health (Габбасова
       Ляля   Адыгамовна,   помощник  министра  Здравоохранения  России),
       speaking  at  conference^  "Implementation  of  International  and
       Constitutional  Guarantees  of  Human  Rights  in  Russian Law and
       Practice"  ("Реализация  международных  и конституционных гарантий
       прав  человека в российском праве и правоприменительной практике")
       with  the  talk  "Questions  of  bioethics  in medical practice in
       Russia   (surrogacy,   transplantation)"   ("Вопросы   биоэтики  в
       медицинской    практике   в   России   (суррогатное   материнство,
       трансплантология)")   confirmed   that  the  notion  of  "presumed
       consent"  in  the draft law is unchanged.^ Article 18 of the draft
       law  on  Transplantation  of Organs is unchanged - paraphrased but
       similar to Article 8 of the 1992 law (Annex 3).



   Government's  position  (point  40)  - people's opinion was taken into
   account.

    1. The  applicants'  opinion, including their representative, was not
       taken  into  account.  No representative of the Ministry of Health
       contacted the applicants for their opinion regarding the new draft
       law,  particularly  its  presumed consent. All the attempts of the
       applicants'  representative  to  get in touch with the Ministry of
       Health  regarding  the  draft  law  were  in vain. The most recent
       attempt  took  place on 12 April 2017 at the MGIMO and the Council
       of  Europe conference when the applicants' representative spoke to
       Gabbasova Lialia Adygamovna.



   Government's  position  (point  41-48).  Russia  is a country with the
   smallest number of transplantations.

    1. Applicants'  position.  The sociological survey by Levada confirms
       that  the  reason  for  small  number  of donors is not due to not
       enough  people  giving consent needed for removal of organs. As we
       learned  above  under  the  1992  law no doctor needs a consent to
       continue  with  organ  removal,  no doctor is obliged to inform of
       planned  organs removal. Under the 1992 law all doctors need is to
       keep  their  mouth shut about planned organ removal. Therefore the
       real  reason  for  insufficient  number  of  donors  is in lack of
       interest of reanimatologists to work with transplantoligists:

   "The   mechanisms  of  the  expression  of  the  will  have  not  been
   established.  As a result, the law is sufficiently broad framework for
   organs  removal  after the death of patients. However, the figures for
   the  number  of  donors  in  Russia  remain  3-4  times  lower even in
   comparison  with countries where the system of organ donation is based
   on  more stringent criteria for obtaining permission to use the organs
   (Spain)."  (page  6 of the Report, Annex 2) ("Сами механизмы выражения
   волеизъявления  созданы  не  были.  В  результате, закон предоставляет
   достаточно  широкие  рамки  для забора органов после смерти пациентов,
   однако,  показатели по количеству доноров в России остаются ниже в 3-4
   раза  даже по сравнению со странами, где система донорства основана на
   более  жестких критериях получения разрешения на использование органов
   (Испания)." (стр. 6 соцопроса, Annex 2).

    2. Levada addressed its own question "Why the real indicator of organ
       donation  remains low when formally enshrined principle of apriori
       consent  for  the formation of the list of postmortem donors?" ("В
       связи   с  чем  при  формально  закрепленном  принципе  априорного
       согласия на становление посмертными донорами, показатель реального
       донорства остается таким низким?") :

   "The  call  for  a  team  of coordinators or transplantologists is not
   based on administrative obligation for doctors-resuscitator. A message
   about  a potential donor to the coordination or transplantation center
   means  immediate  start  of the whole mechanism of the organization of
   work  with  donor  -  resuscitation  procedures to support the work of
   donor's  organs,  conduct  monitorings  of  donor's condition. In this
   respect  the institutional gap between formal norms and informal rules
   of  behavior  of medical personnel occurs. There is no such obligation
   in  law - one can call [a team of coordinators or transplantologists],
   but  at  the  same time one can refrain from calling the experts. As a
   result,  the bond between hospitals and transplant centers is broken."
   (page  38 of the Levada report, Annex 2) ("Вызов бригады координаторов
   или  трансплантологов  не имеет под собой административной обязанности
   для врача-реаниматолога. Сообщение о появлении потенциального донора в
   координационный или трансплантационный центр означает незамедлительный
   запуск  всего  механизма  по организации работы с донором - проведение
   реанимационных   процедур   для  поддержания  работы  органов  донора,
   проведение  обследований  и мониторинг его состояния. В этом отношении
   происходит   институциональный  разрыв  между  формальными  нормами  и
   неформальными    правилами    поведения   медицинского   персонала   -
   законодательно  такой  обязанности  нет  -  можно  вызвать, а можно не
   вызывать   специалистов.   В   результате,   связка   между  лечебными
   учреждениями - центрами трансплантации оказывается нарушена." (стр. 38
   соцопроса, Annex 2)).

    3. This  is  how  lack  of  interest  for cooperation is expressed by
       doctors-resuscitator:

   "If we treat patients badly or if we have not cured a patient [...] we
   can  be  blamed.  That is, we are responsible. But if we lost a donor,
   there  is  no  accountability. For no one is punished. And the lack of
   this  responsibility,  in fact, is a motive not to do this work" (head
   of  Department  of  coordination, Moscow). "Если мы плохо лечим или не
   вылечили,  с той или иной патологией, там, с аппендицитом, с инфарктом
   человека,  нас  могут ругать. То есть, мы несем ответственность. А вот
   если  мы  потеряли донора, то за это ответственности не существует. За
   это  никого  не накажут. И отсутствие этой ответственности, собственно
   говоря,  это  мотив  для  того чтобы не делать эту работу" (заведующий
   отделением координации, Москва).

    4. The  Levada  report  continues: "The other side of this process is
       that  the  structure  of  motivational  incentives  to  doctors of
       medical  institutions  is  not  in  place.  Implementation  of all
       additional  loads  to work with potential donor occurs without any
       remuneration  or  compensation  for  the physical and time costs:"
       (Другая  сторона  этого  процесса  состоит  в  том,  что структура
       мотивирующих  стимулов  для  врачей  лечебных  учреждений также не
       выстроена.  Осуществление всей дополнительной нагрузки по работе с
       потенциальным донором происходит без каких-либо вознаграждений или
       компенсаций физических и временных затрат:):

   "We  do  not  receive any remuneration for this work. This is our good
   deed.  Somewhere in the West, you know, any work is paid. I understand
   how important this is. Most do." (Head of Department of intensive care
   unit,  Saint-Petersburg).  ("Мы  за это вообще ничего не получаем. Это
   наше  доброе  дело.  Где-нибудь  на  западе,  понимаете,  любая работа
   оплачиваема.  Это  дело  идет  к  тому,  что я понимаю, как это важно.
   Собственно, все у нас заведующие отделения реанимации больше вообще-то
   понимают,     как     это     важно"    (зав.отделением    реанимации,
   Санкт-Петербург)).

   "And  here is the chief doctor, where this donor is placed, says: "Why
   do I need this? The person is already dead. I do not have the right to
   write  off medicine and the time doctors spent on a patient, and so on
   and   so   forth.   It  is  easier  for  me  if  there  is  no  donor"
   (transplantologist of kidneys, Moscow) (p. 38-39 of the Levada report,
   Annex  2). (<<И вот тот главный врач, где находится вот этот донор, он
   говорит:  "А  зачем мне это надо? Человек уже мертв. Я на него не имею
   права  списывать  лекарства,  затрату времени врачей и так далее и так
   далее.  То  есть мне проще, чтоб его не было">> (трансплантолог почки,
   Москва) (стр. 38-39 соцопроса, Annex 2)).

   32. Government's  position  (point 49). "Intervention in the rights of
       the applicants was carried out according to the statute, persuaded
       legitimate aim and was necessary."

    1. Applicants'  position. The statute is vague. This vagueness allows
       doctors to altogether conceal information on planned organ removal
       from close relatives of the patient ("potential donor").
    2. In  this  case  of  Alina  Sablina  there was no legitimate aim in
       removal  of  her organs as four (4) organs went missing, they were
       removed  from  Alina  not  for the purpose of transplantation. The
       Government failed to mention the whereabouts of those organs.
    3. It  was  not  necessary  to  make applicants suffer because of the
       secrecy  of  the  procedure.  The organ removal procedure could be
       open without unduly interfering with the transplants. Instead, the
       Government  decided  to keep the system secret as it exists today,
       namely  a system in which public agents have unfettered discretion
       when  it  comes to seeking close relatives' consent prior to organ
       transplants.  Such  a  system  is  incompatible  with the right to
       private  life  guaranteed under Article 8 of the Convention, as is
       demonstrated by the harm suffered by the applicants in the present
       case.
    4. The  Government  failed to address grandmothers separately despite
       the invitation from the ECHR to do so.

   QUESTION 2

   33. Government's  position  (point  60).  The applicants have not been
       subjected  to  inhuman  and/or  degrading  treatment. (point 63) -
       sufferings  were connected with the death, and other circumstances
       but not the removal or organs.

    1. Applicants'   position.   In   reply  the  representative  of  the
       applicants  would like to highlight the interview of Elena Sablina
       to  various media outlets which could be summarized as saying that
       "When  I  learned  that  Alina's organs were removed I felt that I
       lost  my  daughter  for the second time" and other quotes from the
       written motion dated 6 April 2015 to enclose evidence (the list of
       exhibits)   of   moral   sufferings   by   Elena  Sablina  to  the
       Zamoskvoretskiy  district  court  case  file  (see Annex 24 to the
       Application no 4460/16).



   Government's  position  (point 65): "Removal of Alina's organs was not
   reflected on the exterior of the body of Alina."

    1. Applicants'  position. Applicants chose not to reply or comment to
       this  point  as  the  latter is a deviation from the question this
       Court  asked.  The  applicants  have  never  claimed non-pecuniary
       damages  due  to  "Removal  of  Alina's  organs  reflected  on the
       exterior  of  the  body  of Alina." The applicants suffered due to
       secret organ removal.



   Government's  position  (point  67) - circumstances of Sablina case is
   different from Elberte v. Latvia.

    1. Applicants'  position.  Applicants and their representative do not
       see   practical  difference  between  mentioned  cases.  In  fact,
       similarities   between   the   cases   were   explained  in  every
       application,  motion,  or  oral  arguments  submitted  to  all the
       national courts.



   Government's position (point 68) - there was an autopsy but applicants
   agreed with it and this is a normal procedure.

    1. Applicants'  position. Applicants chose not to reply or comment to
       this  point  as  the  latter is a deviation from the question this
       Court  asked.  The Government deviates the attention of this Court
       from  the  issue  -  secret  removal  of  organs  and  not knowing
       whereabouts  of 4 organs out of 6 removed (2/3 of removed organs).
       No  mention as to the whereabouts of the 4 missing organs from the
       body of Alina, which is unacceptable.



   Government's position (point 69): "missing [they mean the two recorded
   organs]  organs  hardly  could influence emotional state of applicants
   more than the fact of death of Alina".

    1. Applicants'  position. Representative of the applicants would like
       to repeat that Elena Sablina's feelings about secret organ removal
       from her daughter's body: "When I learned that Alina's organs were
       removed  I  felt that I lost my daughter for the second time" (see
       Annex 24 to the Application no 4460/16).



   Government's position (point 70): in the case of Petrova v. Latvia the
   ECHR concluded that it was not necessary to consider application under
   art  3  because  it  was  connected  with art 8 which has been already
   addressed.

    1. Applicants' position. In Petrova v. Latvia, the Court decided that
       it  was not necessary to decide whether there had been a violation
       of  Article  3  because  of its finding under Article 8. The Court
       decided  to  exercise  its  discretion  because of the two alleged
       violation under Articles 3 and 8 were closely related. Conversely,
       in  Elberte  v.  Latvia,  the  Court  found  violations under both
       articles.  The  Court  explained,  that  "in  order for a separate
       violation  of  Article  3  to  be found in respect of the victim's
       relatives,  there  should be special factors in place giving their
       suffering  a  dimension  and character distinct from the emotional
       distress  inevitably  stemming  from  the aforementioned violation
       itself"  (para. 137). In Elberte, the closeness of the family bond
       and  the way the authorities responded to the relative's enquiries
       were  said to be relevant factual elements capable of bringing the
       relatives'   sufferings   within  the  scope  of  Article  3.  The
       Applicants  submit  to  the  Court  that  both special factors are
       present  in  this  case.  Firstly,  it  is undisputed that a close
       family  bond  existed  between  Alina and the Applicants. And that
       family bond combined with illegal (in violation of the Convention)
       actions   of   the   authorities  cause  applicants  non-pecuniary
       sufferings (See Annex 24 to the application No 4460/16). Secondly,
       medical authorities completely ignored interests of the Applicants
       in  knowing  what  is  being done to the body of Alina and ignored
       their  wishes.  The  law  enforcements  authorities  dismissed the
       Applicants'  claim  to fully understand what happened with Alina's
       organs.  The  State has vigorously contested the legal proceedings
       initiated  by  the  Applicants  before  seven (7) Russian domestic
       courts  (Zamoskvoretskiy  District  Court,  the  court of appeal -
       Moscow  City  Court,  the  court  of  cassation - the Presidium of
       Moscow  City  Court, the court of cassation - the Supreme Court of
       Russia,  the Constitutional Court - the applicants initiated three
       cases before the Constitutional Court). All these litigations were
       initiated  to  fully  investigate why the applicants' feelings and
       wishes  were ignored, what have been done to Alina's body. Instead
       of  effectively  dealing  with  the applicants' cases, authorities
       threatened  Elena  Sablina with criminal proceedings (see Annex 15
       to the Application No 4460/16).

   QUESTION 3

   39. Government's  position.  The trial hearings were closed for public
       because it was necessary to protect medical information of Alina.

    1. Applicants'  position.  The applicants were not arguing that Alina
       was  treated  in  the hospital in a wrong way. The lawsuit did not
       rest  on  any such argument. The only argument applicants advanced
       was  that  organs  were  removed  secretly.  To  demonstrate  this
       argument,  there  is no need to divulge secret medical information
       or  secrecy  regarding  Alina's treatment. Information about organ
       removal  was  already  in  the  public domain. This initiative was
       advanced  by  defenders  for  the only purpose of seeking a closed
       hearing  away  from  the  public  eye  under  false pretences. The
       defendants  could  have  asked  the court to close the hearing for
       certain  number  of  minutes  to discuss the medical treatment and
       open  the  hearing  for  the  rest  of  the  proceedings.  Instead
       defendants  asked  the  court to close the entire hearing with the
       only goal of concealing the entirety of the facts of the case from
       the attention of the public and the media. This is especially true
       with  regards  to  the  appeal  hearing  because  according to the
       minutes  of  the  appeal  hearing  (Annex 35 of the Application No
       4460/16)  no  medical information was discussed at all. This point
       of  the  applicants  was  raised  before every court and was fully
       ignored by all the courts.



   Government's  position  (point  88): The applicant's representative of
   applicants participated in cross examination of witnesses.

    1. The  applicants'  position.  The  court  refused  the  applicants'
       representative    to    examine   main   witnesses,   namely   the
       transplantologists (see point 18 of the Statement of facts on page
       10 in the Application No 4460/16 and Annex 23; also see point 5 of
       "F.  Statement  of  alleged violation(s) of the Convention" of the
       Application No 4460/16).



   Government's position (point 89)

    1. The  applicants'  position.  Applicants  received  a  copy  of the
       judgment  which was never publicly announced or published in paper
       or  online. On the web-site of the Moscow city court this judgment
       is classified as not for public (see Annex 4).



   Government's   position  (point  92):  the  state  admitted  that  the
   prosecutor was not required in the hearing.

    1. The applicants' position - the procurator participated in the form
       of   presenting  to  the  court  the  procurator's  position  with
       conclusions  on the matter of the case. The latter could influence
       the judge and in fact her only aim was to influence the judge. The
       procurator  was  not  present  at  the  hearing  at  the  stage of
       examination   of   evidence.   Procurator  only  appeared  at  the
       conclusive  part  of the hearing - parties' closing arguments - to
       read  our  procurator's conclusion. This means that the procurator
       made  her  conclusions  without  knowledge  of  the  case  and any
       evidence which was presented. These circumstances confirm that the
       procurator's  reading  out  the  conclusion  had  the only goal to
       influence  the  judge  rather  than  examine all facts of the case
       which she clearly did not do.
    2. On  12  January  2017  the  legal norm of the Civil Procedure Code
       which  allows  this  behaviour  of  the  prosecutor was challenged
       before  the  Constitutional  Court  of Russia (Annex 5). Applicant
       Elena  Sablina  is  still  awaiting  for a decision of the Russian
       Constitutional  Court.  Full update on the litigation which led to
       the  application  to the Constitutional Court was submitted to the
       ECHR in the letter dated 28 April 2016 which reached the ECHR on 6
       May 2016.



   Applicants  would  like  to  update  this  Court on the outcome of the
   applicants'  complaint  considered by the Russian Constitutional Court
   on the issue of constitutionality of the "presumed consent" of Article
   8  of  the  1992  law  as  it  is  interpreted in the medial and court
   practice.  This  applicants'  initiative  was mentioned in point 40 on
   page   13  of  the  Application  No  4460/16.  The  complaint  to  the
   Constitutional   Court   and   follow   up   communication   with  the
   Constitutional  Court  was attached to the Application No 4460/16 (see
   Annexes  41-43).  The Constitutional Court issued Decision No 224-О of
   10  February  2016  on inadmissibility of the complaints. The ECHR was
   updated about this by letter of 3 June 2016 received by the ECHR on 14
   June  2016.  The complaint to the Constitutional Court and Decision No
   224-О of 10 February 2016 was annexed to the letter dated 3 June 2016.



   The applicants' to this case also challenged before the Constitutional
   Court provisions of the Civil Procedure Code which allows the court to
   close  the  hearing from the public during the entirety of the hearing
   and   not   publish   the   final   judgment.  The  complaint  to  the
   Constitutional  Court  dated  23 November 2016 and the Decision by the
   Constitutional  Court  No  1063-O  of  25  May 2017 is annexed to this
   memorandum   for   information  of  this  Court  (Annex  6-7  to  this
   memorandum).



   CLAIMS FOR JUST SATISFACTION. COSTS AND EXPENSES



   Claims  for  Just Satisfaction.The applicants claim 24000 EUR each for
   compensation of their non-pecuniary damage. This claim is based on the
   ECHR  case-law  Petrova  v.  Latvia  and Elberte v. Latvia. Applicants
   claim  that  there  was  inhuman and degrading treatment (violation of
   Article  3)  in  addition  to  violation  of  private  and family life
   (Article 8). Due to the similarities of facts of Sablina and Others v.
   Russia  with  the circumstances in Petrova and Elberte, the applicants
   claim  16000  minimum  for  violation  of Article 3 and 8. Taking into
   account  that  the way to the ECHR the applicants had to fight through
   violations  of  their  right  to  fair  trial (no possibility to cross
   examine  main  witnesses,  participation  of  the  prosecutor, lack of
   public  access  to  the  hearing  and  to  the  case-files,  including
   judgments)  without  access  to  an  effective  remedy,  including the
   Constitutional  Court  (Article  13),  the applicants claim additional
   8000  EUR  as  a  compensation  for  non-pecuniary  damage  caused  by
   violation of Article 6 and 13. In total each applicant claim 24000 EUR
   for  compensation  of their non-pecuniary damage. Grand total is 24000
   EUR X 3 = 72000 EUR.

   Annexes (enclosures):

    1. Report  on  the  results  of  sociological survey "Transplantation
       (removal)  of  organs from deceased patients without their consent
       in   their   lifetime,   or   the  consent  of  their  relatives",
       Yekaterinburg, NGO Sutyajnik, 2017.
    2. Olga  Karaeva, Donorstvo organov: problemy i perspektivy razvitiya
       v  Rossii  (Moskva:  Levada-Tsenter,  2013),  (Olga Karaeva, Organ
       Donation:  Problems  and  Prospects Development in Russia (Moscow:
       Levada-Centre 2013
    3. Draft law on Transplantation of Organs.
    4. Screenshot of the web-page of the Moscow city court's web-site.
    5. The 12 January 2017 application of Elena Sablina and Yuriy Mironov
       to the Constitutional Court of Russia.
    6. The complaint to the Constitutional Court dated 23 November 2016.
    7. The Decision by the Constitutional Court No 1063-O of 25 May 2017.

   Yours faithfully,

   Anton Burkov

   The applicants' legal representative

   ^The  system  does not provide a mechanism for expressing such consent
   and documenting it. Today the only opportunity to establish consent is
   to  ask  close  relatives  when  the worst is already happening or has
   happened.  However,  doctors ignore relatives and keep them uninformed
   regarding  organ  removal  so  that  relatives could not express their
   decision regarding organs removal.

   ^Petrova v. Latvia, 24 June 2014, No. 4605/05.

   ^^Elberte v. Latvia, 13 January 2015, No. 61243/08.

   ^^The  only  medical institution authorized to carry out organ removal
   for further transplantation. Second defendant in the Sablina case.

   ^Olga  Karaeva,  Donorstvo organov: problemy i perspektivy razvitiya v
   Rossii  (Moskva:  Levada-Tsenter,  2013),  40-42  (Olga Karaeva, Organ
   Donation:  Problems  and  Prospects  Development  in  Russia  (Moscow:
   Levada-Centre 2013), p. 40-42). Available at
   [1]http://www.levada.ru/old/sites/default/files/otchet_donorstvo_organ
   ov_v_rossii_levada-centr.pdf.

   ^23 Minute 20 second of the documentary "Transplantology. Challenge to
   the   Death."   ("Трансплантология.   Вызов  смерти.").  Available  at
   [2]http://russia.tv/brand/show/brand_id/58423.

   ^Report   on  the  results  of  sociological  survey  "Transplantation
   (removal)  of  organs  from deceased patients without their consent in
   their lifetime, or the consent of their relatives", Yekaterinburg, NGO
   Sutyajnik, 2017, is also available online
   [3]http://sutyajnik.ru/documents/5030.pdf (Annex 1)

   ^Olga  Karaeva,  Donorstvo organov: problemy i perspektivy razvitiya v
   Rossii  (Moskva: Levada-Tsenter, 2013), (Olga Karaeva, Organ Donation:
   Problems  and  Prospects  Development in Russia (Moscow: Levada-Centre
   2013). Available at
   [4]http://www.levada.ru/old/sites/default/files/otchet_donorstvo_organ
   ov_v_rossii_levada-centr.pdf (Annex 2).

   ^This conference was organized by MGIMO university in cooperation with
   the Council of Europe.

   ^The recording of her talk is available at
   [5]http://sutyajnik.ru/news/2017/04/2775.html

                                                                       21

References

   1. http://www.levada.ru/old/sites/default/files/otchet_donorstvo_organov_v_rossii_levada-centr.pdf
   2. http://russia.tv/brand/show/brand_id/58423
   3. http://sutyajnik.ru/documents/5030.pdf
   4. http://www.levada.ru/old/sites/default/files/otchet_donorstvo_organov_v_rossii_levada-centr.pdf
   5. http://sutyajnik.ru/news/2017/04/2775.html


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