- Whatarethe FamilyRights?

TFansplantation
Gerhard Aigner
ANNALSOF TMNSPLANTATION,Vol. 9, No. l, 2004,pp. I l-14

Abstract:
A short review of legal aspects of organ transplantation. The influence of type of consent and the family aftitude on organ donation rate in all
European countries. A special aftention is given to the legal and ethical aspectsof living organ and tissue transplantation.

Key words: OrganDonation;Presumed/Explicit

ConsenqLegalPositionof FamilyMembers

Advancedknowledgeand continuousprogressof medicine are causinglegal and ethicalchallengesfoequently.

Somespecificfields of medicalsciencelike transplantation of organs,bone manow and tissueshave become
a major medicalchallengewith enormousethical,but also socialand economicimpact. One of the major problemsin organtransplantationis the shortageof donon,

and asa resultmanypatientsdie on the waiting list. This

situation can be influencedby legislationin a remarkable extent.How legislationis dealingmatterslike informed or presumedconsentin organremovalfrom deceasedpersonsincludingthe legalpositionof the relatives
is inlluencing the figures of transplantaionsurgerylike
kidneytransplantationdirectly and intensivly.

TableL l cmational comparisonof (adayc c donation

Donors per I Mio inhabitants (2002)

Consent

Register
yes/no

33,7

pc

Austria

24.3

pc

Lawia

23.9

pc

Portuml

2t,7

pc

Belgium

2t,7

pc

v
v

USA

2t,5

ec

France

20,3

pc

Italy

18,I

pc

Finland

l7,l

pc

13,7

pc

Spain

Canada

t3,5

Great Britain & lreland

t3.4

Denmark

t2,7

Netherlands

t2.6

Germany

t2,2

Sweden

It,0

Switzerland

t0,4

Australia

t0,4

Luxembourg

7,5

Greece
Pc: PreSUmeOCOnSenr
ec: explicit consent
Source: Austrian Health Institute

n
pc

v
n

pc

pc

Ministry of Heakh and Women, Head of Legal Department, Venna,

Austria

transplantations
cadaveric donation

kidney
(cadaveric donation)

kidney
(livingdonation)

45,I

6,5

2t,7

37,O

Austria
Belgium

neart

lung

r5,9

8,2

7 t

t,3

22,6

8,2

4,6

5,0

1.7

liver

Germany

t2,8

23,9

4,7

9 )

Netherlands

I 1,8

22,6

t0,4

6,9

Slovenia

I t,6

23,6

0,0

4,5

2,0

0.0

LUXemDOUTg

I t,4

20,6

0,0

0,0

0,0

0,0

23,6

4,4

3,6

Spain

t,7

47,s

0,8

Finland*

t9,9

36,2

t,4

6,0

France

t7,8

33,0

t,7

r3.4

6,1

t7,6

28,7

t7,l

6,7

6,4

26,1

t,7

t,7

5,5

t.l

5,6

4,8

t,0

2,0

t,9

Italy

l7,l

Czechoslovakia

t6,7

30,2

t,8

Hungary

t3,7

26,2

0,9

0.9

0,0

Switzerland

| 3,2

23,5

I t,0

t2,2

5,2

1 1

Poland

I t,6

22,3

0,9

2,7

3,6

0,0

Swedeh*

r0,9

2t,7

t 0 ,I

It,7

2,7

3,0

Slovakia

t0,6

t8,7

0,7

0,9

t,3

0,0

USA

2t,4

3t , 9

20,9

t6,4

7,8

Australia

9,3

t8,I

t0,2

6,2

3,6

3,9

* Data year 2000

Source:Councilof Europe,TransplantProcurementManagement(fPM), February2003: Eurotransplant;
AustrianHealth Instrtute

So I want to take the next minutes to sive an

in grave danger and a hansplant of organs from
overviewof legislationand other legal aspects'firstin
a deceasedperson is not possible or would give
the field of living organ donation and after this in the
much less satisfactoryresults.The removal may not
field of organ removal from deceased persons
be carried out if there is a serious risk to the life or
includinglhe legalposition of relativesand aspecrsof
health of the donor.
familyrights,focussingon the legalsitualionin-Austria . Complete information about all medical conbut also reflecting on the intemational background.
sequences and all the risks the donor is facing
(informed and expressedconsent).
LMng donor
The consent of the donor must be freely and
Within the legal systemof Austria, there is no specific
consciouslygiven; it can be withdrawn at any time.
legislationon livingorgan donation.exceptblood and
More detailed in other words:
plasma donation (donor and product saleW).
The doctor removing the organ must advise the
Accordingto the principlesand legal requiremenrs'of
donor clearly and fully of the physical,
penal and civil la*, it is a matter oI courseand should
psychological,family and social consequencesof the
only be mentioned due to reasons of completeness,
removal. The doctor must exnlain clearlv the
that living organ donation never can be linked with
possibleproblemsind risksaswell as
consequences.
foreseen lethal effects or lethal risks for the donor.
the chances for the recipient to be treated
successfully.
!h9r.9tore legal requirements deriving from penal
and civil law are:
The consent of the donor may not be given in
. Risks of the donor and chances for the reciDient
exchangefor financial compensation (you may be
have to be balanced carefullv. This means.-that
astonished,that in the field of living donation the
removal of organs which ar-e not regenerative.
Austrian legal system is not providing an explicit
should only take place if the life of the recipient is
ban on offering organs in exchange for financial

selling organs and organ trafficing are banned).

. The doctor giving the information to the donor has
to insure, that the donor has fully understood.
. Information and consent of the donor have to be
taken to the medical report and kept in documentary evidence.
. Although the Austrian legal systemdoesnot require
the patient's signature in general (a lot of
exceptions prove that rule), the document of
information and explicit consent should be signed
by the donor.
Living organ donation/removal ignoring these
principles can easily and quickly fulfill an offence of
penal law and/or cause consequencesin civil law, e.g.
doctors liability for damagesin health.
Specific questions of relatives, family law and legal
representation are raising in casesof donors not able
to give consent,especiallyminors.
The Austrian civil law is providing the fundamental
and general principle, that decisions of legal
representatives(normally parents; not all relatives in
general) can only be taken in favour of the person
represented. It is the fundamental duty of legal
representatives,to ensure the benefit for the person
represented. This principle would lead to the legal
consequence,that minors and other persons not able
to give consent never could be an organ donor.
Obviously this result would cause serious disadvantages in cases, when bone marrow donation
between sisters and brothers is bearing the only one
treatment.
chancelor successful
The Austrian Ministry for Justice found an
interpretation compatible with the principle I have
mentioned iust before:
Decisioni in favour of the interests of the minors
have to regard more aspectsthan the present situation.
This means, that refraining bone marrow donation
could causethe death of sister or brother, a fact, which
could be a serious psychologicalburden in the future.
So parents (legal representatives)are allowed to give
lesal consentto bone marrow donation between minor
agld sistersand brothers; reflecting on the whole life,
the psychological benefit for the young donor by
savingthe life ofbrother or sisterhas more importance
than the cunent situation of risks and burden for the
health causedby donation of bone marrow"exit interpretation" is
I have to confess,that these
a wobbling way. So I would be very glad if Austria
"Oviedo-Convention" (the
would ratif the so-called
Council of Europe's convention on human rights and
biomedicine) and - important in the context of
transplantation law - the additional protocol
conceming transplantation of organs and tissues of
human orisin. It's article 14 reads as follows:
':Article-l4 - Protection of persons not able to
consentto otsan or tissue removal
1. No organ or tissue removal may be carried out on
a person who does not have the capacity to consent
under Article 13 of this orotocol.

to consent may be authorised provided the

following conditions are met:
I there is no comoatible donor availablewho has
the capacity to Consent;
II the reciDient is the brother or sister of the
donor;
III the donation has the potential to be life-saving
for the recipient;
IV the authodsation of his or her representativeor
an authority or a person or body provided for by
law has been given specifically and in writing
and with the approval of the competent body;
V the potential donor concerned does not objecl."
So a ratification would force the Austrian legislation
to make amendments in the national transplantation
law and to eliminate the legislative lack, following to
the articles of the convention of the Council of
Europe.
Cadaveric organ donation
In general, there are two possible legal solutions:
explicit or presumed consent.
As mentioned before, the Austrian parliament
decided in the year 1982to legislate (short amendment
to the Austrian Hospital Act) that it shall be
permissibleto removeorgansor parts of organsfrom
deceased persons in order. by means of their
transplantation, to savethe life or restore the health of
another person. Such removal shall be prohibited if
the physicians are in possessionof a declaration in
which the deceasedperson ot prior to his death, his
legal representative,has expresslyrefused his consent
to organ donation. The organ removal may not result
in disfigurement of the cadaver that is incompatible
with the dignity of the deceased.
Organ removal may be performed only after the
occurence of death has been determined by
a physician licensed to practise indepentently. The
physician in question may not perform either the
brgan r.rnouai or the trahsplantalionand may not
otherwise be involved in or concerned by these
orocedures.
The organ removal may be performed only in public
or non-profit hospitals.
Organs or parts of organs of deceasedpersonsmay
not be the subiect of transactions carried out with
a view to orofit.
The right of information provided by data
protection law shall not apply to data concerning the
donor or the recipient.
In the very next future an amendment will pass the
Austrian parliament, legislating,that refusalsto organ
donation, registered in the computer system of the
Austrian Health Institute, are to be respected
obligatory, too. From the legal point of view, there was
no doubt all over the time, that these refusals have to
be respected, but clear legislation never could be
a failure. So the register of refusalsto organ donation,
which has been establishedin the vear 1995,soon will

fbrmalism. The legal wording "Physicians in cadavericorgan donation. Article 17 of this additional
possession
of a refusalto organ donation'' is ooenins protocol is providing consent or authorisation
a wide range of varieties toi refusals. Tb maki sure] required by law. Furthermore, the removal shall not be
tiat refusals are not untnown and not ignored, it is carried out if the deceasedperson had objected to it.
recommended to document the refusal in the There is no doubt, that tie Austrian leeislation is
computer register or to add the refusal to the medical providing clear authorisation for orgai removal
record. But any other way to expfessdissent to organ including clear rules for refusalsto be respected.
donationis open.e.g.to add the declarationof diss-ent
to the identity card or drivers license. Obviously, there Future aspects
are more or lessrisks that refusalsare discoveredor Summarizing, the Austrian legislation should
noU physicians are not obliged to start anv eliminate some lacks in the field of livins donation.
investigations
on porentialrefusali to organ donation-. especiallyrelated to minors or other perso-ns
not able
The paragraphs referred above do not provide anv to consent including the positioir of legal relegal force to family members. Only objeitions fiom presentatives.In the field of cadavedc donation, the
legal representatives(normally parents lor minors), Austrian transplantationlaw seemsto be in line wirh
expressedprior to the death of the donor, are to be international law, the more so as the Council of
respected.I remember very well the political discussion Europe and European Union are accepting both
which was running in the parliamint and the clear systemsof presumed or explicit consent.
intention of the deputies, that in caseso[ minors as
Within the European Union, a discussion has
potential donors no legal obligation should force started on cross border patient's mobility. On the
doctors. policemen. rescue workirs or other to ask other hand, European Union is legislating the
parents for consenl to organ donation in the same responsibility of each member state foi the organimomentofbeing informedthat a child hasdied.parents sation and delivery ofhealth servicesand medical care,
$9uld have the right to refuse to organ donation, but especiallyin the field of donation of organs (see
this decision has to be done for the fiture in principle,
Art. 152Paragraph5 of the Tieaty).
and not under circumstances of emotional buiden.
There is no doubt about the importance of
This legislation seemsto follow the prototlp of similar internationalcooperarion,e.e.ioinineEuiotransDlant.
rules,givenby the Austrian empressMaria Theresiaand Tbere is also no doubt abou-rill adiantapesof bther
her well known chief medical advisor Cerhard van international cooperation. e.g. cross Sorder coSwieten,dealing with matters o[ compulsoryau(opsies, operation between clinical hospitals,perhapsbasedon
even for scientific pumoses. Furthermore it seerirsto bilateral agreements. But new systema of interbe con_tinuouslyaccipted by public opinion on national cooperation in transplantation medicine
a remarkablehigh level.Ttre Austrian Health Institute is should not causenew or longer waiting lists due to the
reporting a figure of only 9.050 computer registrated fact, that countries legislating presuired consent to
refusalsto organ donation,including550 foreieners(the cadaveric donation could be forced to offer transAustrian legislationdoes not make env differeice in it's plantation treatment in a wide range for patient's
application on Austrians or foreigners.l.Related to the coming from countries, which legislation on organ
number of 8 Mio Austrians, this figure is approximately removal is a very restricted one. It should be clear, that
0,117oof refusals.
deciding between s)"stems of presumed or explicit
The legal wordings_"permissible organ removal,' consent means facing consequencesfor the rates
and _"re-fusals
by legal representativesprior to the o[ transplantationmedicine and for the leneth of
death of the donor" are providing legal iecuriry, that waiting lists.
organ removal based on presumed consent is
accordingto law. But this legaliecurity doesnot forbid Address reprint requests to: Gerhard Aigner MD,
contacts between docton and relatives. So in dailv Ministry of Health and Women, Head of Legal
hospital life. beyond legal guaranteedoctors retrain Department, RadetzkysrraBe2, A-1030 Vienna,
trom organ removal in cases of contacts to relatives Austria
refusing organ removal strictly.
Phone: ++43 1.711004882,
On international level, the additional protocol to Fax: ++43 | 718 7183
the Council of Europe's convention on hriman rights E-mail: gerhard.aigner@bmgf.gv.at