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The ethical issues of living donor kidney transplantation, which is the treatment of choice for patients with end-stage renal failure, are the focus of intense debate. Some of those issues are related to the safety of the operation for the donor, and others are related to the motivation of the donor, the approach to and evaluation of the donor, donation by strangers, the commercialization of donation, surrogate consent for donation, and the acceptance of minors as donors. The lack of clear consensus regarding these issues results in differences in practice, not only among countries but also among transplant centers. We believe that after an open debate, agreement on certain generally accepted principles can be achieved. Such an agreement would protect potential donors and recipients and would ensure the future of living donor kidney transplantation.
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Chapter 1
Ethical Issues in Living Donor
Transplantation
Vassilios Papalois and Evangelos Mazaris
Introduction
Live-donor transplantation is an amazing act of altruism that affects the
lives of the donor, the recipient and their families forever. Some of the
greatest triumphs of modern surgery are associated with live donor trans-
plantation. All of them are characterized by a lot of inspired and
tremendously hard work of multidisciplinary medical teams and the
courage and determination of the patients and their families.
Live-donor kidney transplantation is the treatment of choice for end-
stage renal failure. The main reasons for this are as follows: (a) the transplant
is performed when the donor and the recipient are in an optimum medical
condition and at a time that is convenient for them and their families,
(b) recipients of live-donor kidney grafts enjoy much better long-term graft
survival and quality of life compared to recipients of cadaveric kidney
grafts,
1–3
(c) it reduces the cost for the health service for every patient with
end-stage renal failure, since the cost of dialysis (£60,000/patient/year) is
substituted by the cost of live-donor kidney transplant (£25,000/patient),
adding the cost of the immunosuppressive medications, (£3,000/patient/
year) and (d) it reduces the number of patients on the cadaveric waiting list
and therefore increases the chances of patients with no potential live donor
to be transplanted. This is particularly important since the gap between the
number of cadaveric donors and the number of patients on the waiting list
1
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2 V. Papalois and E. Mazaris
is increasing. This can be explained partly by the development of strong
national campaigns for safe driving, a significant improvement in the safety
features of vehicles (e.g. airbags) and a more stringent monitoring by the
police which have caused a reduction in road-traffic accidents, as well as an
introduction of healthier lifestyles, which has led to the reduction of strokes.
In the UK, data from UK Transplant, the national regulatory authority for
organ donation and transplantation, demonstrated that between 1994 and
2003, there was an increase of 60.1% of the patients on the cadaveric list for
kidney transplant and a 16.7% decrease in the number of cadaveric donors.
4
In fact, there is a growing population of patients maintained on dialysis all
over the world, while the number of donors fails to meet such demand or is
even decreasing as has happened in the UK (Fig. 1). Although there is an
increase in the number of live-donor kidney transplants in the UK (18%
from 2002 to 2003, 372 to 439 respectively), still there is a long way to go
and the number remains lower compared to the Scandinavian countries,
which have the higher percentage of live kidney donors in Europe (Table 1).
Similarly, over the last two decades live-donor transplants are being
performed very successfully for other solid organs, such as the lung (total
or lobe), liver (lobe or lobes), pancreas (only its tail) and part of the small
bowel. This is seen especially in countries such as Japan or India, where
cadaveric donation is limited by religious and cultural prohibitions against
the concept of brain death, and live donors may be the only source of
organs for transplantation.
Retrieving an organ or part of an organ from an otherwise healthy
individual and exposing them to the risks of surgery (however safe it
might be in experienced hands and in modern transplant centres) as well
as to the potential long-term risks for their health and quality of life, for
the benefit of another person, posses several ethical questions that have
initiated a great deal of medical and public debate.
Ethical Issues
Safety
The first issue is the safety of the surgical removal of organs from an other-
wise healthy individual; what are the long-term consequences of living,
for example, with one kidney and what is the effect of such a procedure on
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Ethical Issues in Living Donor Transplantation 3
quality of life? Undoubtedly the risks for living donors of segmental liver,
segmental lung and segmental pancreas transplants are greater. The mortal-
ity rate of live-donor nephrectomy has been calculated to be 0.03%
5
with the
life expectancy of a live kidney donor similar to that of the general popula-
tion.
6,7
Many surveys have reported excellent quality of life for live
donors
8–12
and a meta-analysis of the minority who exhibited negative feel-
ings regarding donation demonstrated that they had donated to recipients
2673
2780
2578 2576
2388 2386
2334
2339
2333
2222
853
710
770
778777
745
757
821829
875
5631
6003
6278
6462
6507
6676
6779
6842
7072
7278
0 1000 2000 3000 4000 5000 6000 7000 8000
1994 1995 1996 1997 1998 1999 2000 2001 2002 2003
Year
Number
Cadaveric donors Transplants Waiting List
Figure 1: Number of cadaveric donors and kidney transplants in the UK and patients on
the waiting list for the period 1994–2003. Obtained from UK Transplant showing the
decrease in cadaveric donors and the increase in patients on the waiting list for a kidney
transplant from 1994 to 2003.
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4 V. Papalois and E. Mazaris
Table 1: Kidney transplant activity in Europe, 2003. Figures for UK and Republic of Ireland taken from National Transplant Database,
March 2004 and all others from the Organizacion Nacional de Transplantes (ONT).
Scandia
b
Republic
Eurotransplant
a
France Italy Spain transplant UK of Ireland
Cadaveric kidney 3345 1991 1489 1991 654 1297 133
transplants
Live-donor kidney 646 136 135 60 271 439 0
transplants (16.2%) (6.4%) (8.3%) (2.9%) (29.3%) (25.3%)
Total kidney 3991 2127 1624 2051 925 1736 133
transplants
a
Eurotransplant includes Germany, Austria, Belgium, Luxembourg, the Netherlands and Slovenia.
b
Scandia Transplant includes Denmark, Norway, Finland and Sweden.
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who died within one year after the procedure. Although animal studies
demonstrated that glomerular hyperfiltration in the remaining kidney could
eventually compromise its function, it was proven by several studies in
humans, with a follow-up period of over 20 years, that the remaining kidney
did not present any functional abnormality
13,14
apart from a slight increase in
the rate of proteinuria but with no clinical significance.
15
The longest pre-
sented follow-up of people with one kidney was a 45-year follow-up survey
of 62 World War II veterans, who had undergone uninephrectomy after renal
trauma, yet their survival rate was similar to that of other veterans.
16
There are three types of operations for a live-donor nephrectomy: the
classic open nephrectomy with a wide flank incision, laparoscopic
nephrectomy using key-hole surgery and the mini-open nephrectomy with
a small loin incision of 8 ± 1 cm anterior to the eleventh rib without rib
resection and with the use of laparoscopic instruments.
17
The classic open
operation may act as a disincentive for the donor because of increased sur-
gical pain, increased hospital stay, poor cosmetic result and extended
period of convalescence. With the introduction of minimally invasive
techniques the surgical morbidity has decreased, there is earlier return to
normal daily activities as well as work and the cosmetic outcome is excel-
lent. In the beginning, laparoscopic nephrectomy was considered as
harmful because of longer warm ischaemia time (the period lasting from
the clamping of the renal vessels until perfusion of the retrieved kidney
with cold preservation solution), but with the advent of modern devices
(e.g. endocatch) that period was shortened making it comparable to open
nephrectomy.
18
In a survey it was demonstrated that, although the intro-
duction of laparoscopic nephrectomy influenced positively potential
recipients, probably because they anticipated minimal complication
inflicted upon their donors, it had less impact on potential donors’ deci-
sion to donate.
19
However, in laparoscopic donor nephrectomy there is an
increased incidence of ureteral complications and the pneumoperitoneum
decreases renal cortical blood flow and urine output.
20,21
The mini-open
nephrectomy technique offers the advantages of laparoscopic nephrec-
tomy and it also reduces warm ischaemia and operating times, making it
even safer for the potential donor.
17
Even life insurance companies in the
US have acknowledged the above facts and in a conducted survey 94% of
them do not consider the otherwise healthy donor to be at increased risk
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of morbidity or mortality after donating, yet only 2% would increase the
premium for such a donor.
22
Donors motivation
Another important ethical issue is the motivation of the donor. From
recent surveys
23,24
several categories of motives for live-organ donors
have been identified.
First of all there is a desire to help, which is very strong and often
considered as something natural. Another is a feeling of moral duty, that
is, in order to distinguish it from the desire to help, a perception that dona-
tion is something that you are expected to do. The majority of donors
derive a tremendous degree of satisfaction and an increase in their self-
esteem from doing good deeds. Also, some donors may imagine
themselves in the recipient’s situation, especially siblings, who are sure
that the latter would act accordingly if they were in a similar state.
Furthermore, spouses may be motivated by self-benefit from their com-
panion’s improved health and the improvement of the couple’s quality of
life. That may be the case for parents as well, together with the feeling of
moral duty. A minority may feel coercion to donate especially by other
family members fearing that relations among family members would be
disturbed if they denied donation. There may be several factors in support
of donation and others causing concern (Table 2). More rare motives may
be religious beliefs or a feeling of guilt in past relationships.
Donors feelings about donation
The decision to donate is, psychologically, a complicated one. For exam-
ple, potential emotionally related donors are informed that dialysis is an
alternative option and therefore kidney transplantation is not a life-saving
procedure, yet still they feel that they are the only option for the potential
recipient.
24
Another important result from a recent survey in Scandinavia
is that males regard donation as an extraordinary gift, whereas females
regard it as an extension of family obligations.
23
Another particular aspect
of the concept of donation is that the decision to donate is spontaneous
and usually donors do not experience negative consequences regarding
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family relationships, with conflicts between the donor and the family
being rare.
25
However, in order not to affect the sensitive family relation-
ships, the transplant team should achieve the wider possible family
consensus regarding the donors decision to donate thus minimizing the
possibility of any future conflicts. It has also been demonstrated by vari-
ous surveys that the majority of donors would have made the same choice
again without regretting their decision
26,27
and would even encourage oth-
ers to donate.
12
According to other surveys, although parents decide
immediately to donate there is a degree of ambivalence experienced by
some fathers.
28
In the same study it was demonstrated that the decision for
siblings is more complex and may cause conflict between family of birth
and family of marriage.
Recipient’s feelings about donation
For the recipients, feelings of guilt are more prominent especially if they
have a close relationship with the donor.
29
An interesting study showed
Ethical Issues in Living Donor Transplantation 7
Table 2: Several factors work in support of the motives and the decision to donate. Other
factors are of concern but did not prevent the respondents from donating.
24
Factors in Support
Previous knowledge of transplantation and donation.
Long-standing awareness of the relative’s future need of a transplant.
Getting a good health screening during assessment.
The long waiting time for a cadaveric kidney transplant.
Trust in the health care services.
Support from family and friends.
Recognition from the recipient.
Oral and written information.
Factors of Concern
Fear of not passing the medical screening.
Fear of surgery and long-term consequences.
Fear of poor outcome for the recipient.
Objections in the family.
Concern that alternative potential donors have not come forward.
Weak emotional relationship with the recipient.
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that adolescent recipients of parental grafts experienced strong feeling of
obligation and debt, which led to psychological distress, and social as well
as familial alienation, probably because of the enhancement of the usual
parent–adolescent conflict due to the transplant procedure.
28
However,
other studies
30
did not demonstrate a negative impact on family relations
in parent-to-child donation, taking into consideration that the children
of this study were younger and not adolescents. It is also interesting
that recipients are sometimes reluctant to accept a live-donor kidney
when offered to them, and as a study confirmed, more than half of the
patients on dialysis declined the offer of a live-donor kidney because of
concerns about the donors health and fearing also that the procedure
would compromise their relationship with the donor.
31
Donor approach, consent and evaluation
Prior to accepting a potential donor, every effort has to be made to ensure
that their offer is genuine and voluntary. The person who consents to be a
live donor should be ‘competent, willing to donate, free from coercion,
medically and psychosocially suitable, fully informed of the risks, bene-
fits and alternative treatment available to the recipient’.
32
The most
important elements of informed consent are: (a) understanding, (b) med-
ical and psychological suitability, (c) the process of informing the donor,
(d) absence of coercion and free choice, and (e) documentation of consent.
The potential donors have the right to receive and understand all the
necessary information (Table 3) regarding the risks and benefits to them-
selves as well as the alternative treatments that could be offered to the
potential recipient. The source of such information is essential and cer-
tainly could not come, for example, from brochures or the recipient’s
physician, as a recent study demonstrated.
23
Transplant centres seem to be
the potential donors only source of information since they possess the rel-
ative scientific experience to inform him. Yet a transplant centre may have
a number of reasons for wanting an organ donation to go ahead: trans-
plants are their source of income; they are able to increase their prestige
and conduct research but they may also display a strong desire to help the
recipient. Negative information should be presented to the donor. This
might have a negative effect, but that is why the transplant team should
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inform the donor meticulously
33
so that they can make a truly voluntary
decision. For these reasons, independent donor counsellors are required
with experience in issues related to live-donor transplantation and medical
ethics. Others
1
have advocated that the first approach to the potential
donor should come from the potential recipient and not from the latters
physician or surgeon, although they could offer their assistance in order to
facilitate this process. The fact that more education is needed regarding
live-donor kidney transplantation is also demonstrated by studies showing
that the public may exhibit unrealistic fears regarding the issue, which
may act as a disincentive for donation.
34,35
Probably the best way to assess
if a potential donor has been adequately informed is whether they are sur-
prised by anything that happens after consent is given.
32
All potential donors should be screened for psychological and emo-
tional stability and warned about possible psychosocial impairment that
might occur in the postoperative period.
36
Psychosis or substance abuse
might hinder the provision of effective operative and postoperative care,
thus, leading to exclusion of such candidates for donation. Moreover,
social evaluation of the potential donor is also necessary since financial
hardship and marital problems, which indicate social instability, may
Ethical Issues in Living Donor Transplantation 9
Table 3: Information elements for potential living donors (live-organ donor consensus
group).
32
Description of the evaluation, the surgical procedure and the recuperative period.
Anticipated short- and long-term follow-up care.
Alternative donation procedures even if only available at other transplant centres.
Potential surgical complications for the donor, citing the reports of donor deaths
(even if never experienced at that transplant centre).
Medical uncertainties, including the potential for long-term donor complications.
Any expenses to be borne by the donor.
Potential impact of donation on the ability of the donor to obtain health and life
insurance.
Potential impact of donation on the lifestyle of the donor and the ability to obtain
future employment.
Information regarding specific risks and benefits to the potential recipient.
Expected outcome of transplantation for the recipient.
Any alternative treatments (other than organ replacement) available to the recipient.
Transplant centre-specific statistics of donor and recipient outcomes.
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cause several problems. The person who will make the psychosocial eval-
uation of the potential donor should be a trained psychologist or
psychiatrist.
The argument that the potential donors require a lot of information
and thinking prior to deciding to donate is, according to some studies, a
myth.
37
A quick decision to donate is valid, despite the fact that it might
not be fully informed, since rapid offers made by close relatives seem to
be genuine and ethically acceptable in spite of incomplete understanding
of what is involved.
38
However, adequate information should always be
provided to the potential donor as well as establishing that it is under-
stood. A characteristic example is that for many parents it is crucial, as
well as adequate, to be aware that their child is ill and they could help by
donating a kidney. This does not mean that the effort to inform the poten-
tial donor has to be abandoned, but in cases where the potential donor and
recipient are close and sentimentally related, rapid or instant decision
making should not invalidate consent. Nor should the donor, under any
circumstances, be sacrificed for the recipient even if they are prepared to
accept the sacrifice; that is why an offer by a prisoner to donate his sec-
ond kidney to his daughter, after having donated his other kidney again to
her a few years ago, was declined.
39
Many of the potential donors may feel obligated to donate to their
emotionally related recipients and they may feel unable to have true free-
dom of choice. Someone could argue how anyone could deny donation
when the lives of close relatives are at stake? Moral and emotional com-
mitments are not constraints of freedom but are rather a part of ordinary
human life.
40
On the other hand, we should wonder how could anyone
face their family members if they deny donation? That is why an inde-
pendent experienced psychologist should establish that the potential
donor is free from coercion and external pressure. The donor should also
be given a certain period of time to review the decision to donate as well
as the liberty to withdraw at any point of the evaluation process. Some
41
believe that the reluctant donor should be provided with a medical alibi to
justify his hesitation to the family. However, the general belief is that physi-
cians should always be truthful and clear to their patients, avoiding lying
and falsifying medical documents, which can clearly have catastrophic
consequences.
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Donor/transplant team’s autonomy
It seems that the general public strongly believe that it is the donors sole
right to donate an organ and this decision should rest with the donor.
42
Yet,
for physicians the prevailing principle according to the Hippocratic Oath
is to ‘do no harm’. Does a surgeon have an obligation to remove a per-
son’s organ upon request? In liberal and democratic societies everyone
has the right to participate in dangerous activities according to their will,
but the transplant procedure involves an ‘accomplice’; the transplant sur-
geon. Rejection of a potential donor by the transplant surgeon may seem
a paternalistic act, yet physicians are also responsible for the potential
donors welfare and should act in what they believe is their best interest.
Despite the low donor mortality and morbidity rate, the transplant surgeon
always risks causing harm to an otherwise healthy person. It is unethical
for physicians to conduct harmful interventions and create medical prob-
lems deliberately such as in the aforementioned example of the
father-prisoner who wanted to donate his remaining kidney to his daugh-
ter.
39
If transplant physicians feel unable to accept a potential donor they
should inform them of the reasons for rejection as well as offer them refer-
ral for a second opinion. A transplant surgeon may refuse to accept a
donor because of: (a) a borderline medical problem (e.g. borderline hyper-
tension) that may aggravate after donation); (b) elderly donors and
(c) potential serious technical difficulties during the operation that might
increase the risk of complications.
Many donors are rejected because of advanced age, although one may
wonder, is it physical or biological age that counts? Donors may argue
that it is upon them to decide whether to undertake the increased risk.
What if a mother at added risk wants to donate to her child whose health
is deteriorating, even though donation is considered by the transplant cen-
tre ill-advised?
43
Should the determination of acceptability, in such cases,
rest with the transplant centre alone? There are great variations in the
exclusion criteria used by various transplant centres.
6
Because of these
differences in the exclusion criteria (Table 4) research is required, con-
cerning results on the outcome of increased risk donations, in order to
achieve a consensus either on the aforementioned criteria or even on the
way to introduce them.
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It has been suggested that donors age 55 years negatively affected
the 1- and 5-year kidney graft survival rate.
44,45
Other researchers have not
found any difference in graft survival according to the age of the donor.
46
Grafts from older donors may display tissue inflammation at the time of
procurement which may increase immune recognition.
47
There are changes
associated with age in the number and size of glomeruli in nephrons, a
progressive decrease in glomerular filtration rate as well as increased
immunogenicity of the aging kidney. This data seems to contradict those
who advocate that physical age does not count and biological age of the
donor should be the criterion to proceed with the transplant.
Furthermore, there is debate on the length of time that a patient suf-
fering from renal failure should remain on dialysis. Studies have proved
that an increased time on dialysis has a negative effect on graft
48
and
recipient survival.
49
It is probable that the reasons are the longer history
of end-stage renal disease with the accumulation of co-morbid conditions
as well as the increase in the rate of acute rejection through various
immunological mechanisms.
50,51
Researchers also found that pre-emptive
transplantation i.e. transplantation before exposure to any period of dialysis,
12 V. Papalois and E. Mazaris
Table 4: Acceptance and exclusion criteria for living donors at US
transplant centres.
6
Risk factor Centres accepting (%)
History of renal stones 56
Microhaematuria 56
Alcohol abuse 89
Heroin and cocaine abuse 66
Risk factor Centres excluding (%)
GFR < 80 ml/min/1.73m
2
59
GFR < 60 ml/min/1.73m
2
80
All patients with proteinuria 58
Some patients with proteinuria 90
Moderate obesity 16
Heavy cigarette use 16
Family history of type II diabetes 17
Type II diabetes 88–90
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was associated with better graft survival when compared to transplanta-
tion performed after the initiation of dialysis.
52–54
Although in an initial
study the short duration of dialysis >6 months worsened graft survival but
not patient survival,
52
in a more recent study it was demonstrated that the
worsening of the graft outcome only became significant after six months
on dialysis, whereas the recipient survival was significantly worsened
only after one year on dialysis.
55
These facts could support those who
advocate that we should allow the patient with end-stage renal disease to
remain on dialysis for a limited period of time, in order to become aware
of the advantages and disadvantages of such treatment and compare it
with the patient’s quality of life after transplantation, so that they can
appreciate it more.
Live unrelated donation
It has been well established that live unrelated (i.e. emotionally related
donors such as spouses, partners or friends) kidney grafts have better
long-term survival than cadaveric ones and are comparable to live related
grafts.
56–58
In the US, in 1987, spouses accounted for 2% of living kidney
donors, yet by 1997 they accounted for almost 10% (Fig. 2). In a 1996
survey in the US, 90% of transplant centres accepted emotionally related
donors and 60% encouraged emotionally related donation, 40% of them
preferring spouses and only 21% accepting friends, demonstrating a
marked change in attitudes compared to a similar survey performed in
1989.
59
Advocates of spousal donation from the US,
59,60
Japan
61
and
Switzerland
62
have reported improved family psychodynamics including
strengthening of marital bond, restoration of the functional role of the
husband and wife, improved sexual relationship and emotional bonding
with children. On the other hand, in certain cultures where the male is a
dominant figure, spouses may be forced to donate. That is why spousal
donation remains illegal in France
63
and involves complex procedures in
the UK.
64
In the UK, the Unrelated Live Transplant Regulatory Authority
(ULTRA) assesses the ethical and moral issues in proposed transplants
between genetically unrelated individuals requiring both potential donor
and recipient to write personal statements as part of the procedure. There
are propositions for its abolition
65
because spousal donation is becoming
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acceptable by using a simplified method with which the physician takes
responsibility for the emotional relationship between donor and recipient,
e.g. in the US where a signed declaration by both donor and recipient that
they are spouses or partners is required. There are surgeons against
spousal donation advising that since 30–40% of marriages end in divorce
there is no guarantee of a long-lasting loving relationship as a motive for
such donation.
66
Friends have been accepted reluctantly as potential donors, despite
the fact that they might feel less pressure to donate compared to a family
member, although such practice has never been restricted.
Donation by strangers
In the past, the majority of transplant centres disapproved living donation
between strangers (non-directed donation), expressing doubts about: (a) their
14 V. Papalois and E. Mazaris
0
200
400
600
800
1000
1200
1400
Number of donors
Parent
Child
Sibling
Half sibling
Other relatives
Spouse
Other unrelated
1988 1997
Figure 2: Relationship of live kidney donors to recipients in 1988 versus 1997 showing
the increase in distant relatives and unrelated donors in the US.
42
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motivation and commitment to donation; (b) their understanding of
the potential risks and (c) their psychological stability.
67
Yet in recent
surveys in the US, there is strong medical and public support for the
acceptance of strangers as donors. Studies have found no regrets or psy-
chological implications following non-directed donation.
68
Such donors
may also benefit from their act with increased self-esteem and may expe-
rience even greater satisfaction without being coerced by any sense of
obligation.
Researchers have proposed that in non-directed donation, the donor
and recipient should remain anonymous to each other and probably meet
only after the transplant, if they both agree.
69
It has been suggested that
true altruists do not need the name of those they help.
70
In case anonymity
is not respected there is a risk of future financial requests from the donor.
Yet, we should acknowledge that the donor might want to see the results
of their good deed, and the recipient might want to express their gratitude
to the donor.
In 1996, a German professor of surgery and head of a transplant cen-
tre, Dr Jochem Hoyer, voluntarily donated a kidney to an unknown
recipient chosen from the Munich waiting list. This has led to proposals,
in Germany, of a registry for non-directed donors.
71
It seems unethical to
allow potential donors to specify particular characteristics of the recipient
(e.g. age or race) although some surgeons
72
have suggested that if people
were allowed to donate to someone they feel connected to, the number of
donated kidneys would rise. Finally, there are individuals that doubt that
anyone would consider non-directed donation without any substantial
reward.
73
Commercialization of organ donation
Perhaps the hottest debate in live-donor transplantation nowadays is in
regard to the potential financial rewards for the donor. In the UK, the Act
of Parliament in 1990 made the sale of organs illegal and stipulated that
proof of a relationship between donor and recipient must be genetically
established before transplantation. This Act was produced after a General
Medical Council’s enquiry into a case of a British physician’s involve-
ment in transplants involving Turkish peasants.
65
As we mentioned earlier,
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in the UK the law requires that a renal transplant in which donor and
recipient are not blood related relatives (including spouses) must be
approved by the ULTRA, whose chairman is appointed by the Secretary
of State for Health.
74
In the US, the transplant team is responsible for
determining and assessing the motive of the donor, and the sale of organs
is illegal. Yet the shortage of cadaveric organs has led to a worldwide
black market for living-donor organs, with patients who possess the nec-
essary means travelling to distant locations in order to purchase a kidney
for transplantation.
On one hand we consider the purchase of organs as a hideous act
(deontologial ethical approach), yet on the other we are obliged to con-
sider ways to increase the live-donor pool (utilitarian ethical approach).
For example, in Bombay, India, the price for a woman’s kidney is alleged
to be $1,000; in Manila, the Philippines, a man’s kidney is said to be worth
$2,000; and in urban Latin America a kidney can be sold for more than
$10,000 with additional payments to the brokers in all the previous cases.
75
While Americans are purchasing kidneys from strangers in China, Peru
and the Philippines, the current federal law does not prevent these patients
from returning to the US for post-transplantation care.
76,77
Furthermore,
there are also allegations that affluent patients from other countries have
paid at least $200,000 to undergo transplantation at US centres, as part of
a package pre-arranged outside the US by international brokers, including
compensation for unrelated donors.
75
Some of the arguments and counterarguments related to the commer-
cialization of organ donation are as follows:
(a) It is unethical to sell your body or your organs, since the importance
of life is paramount and every human being is special. Organs cannot
be regarded as commodities for sale. For the same reasons that we
cannot accept prostitution and child trading, we cannot endorse com-
merce of human organs. Some might argue that in a free society, the
individual is entitled to do anything they want, including selling their
organs, as long as they are not restricting the liberty of their fellow
citizens.
(b) A poor donor is compelled by their financial status to donate, thus
making the action non-voluntary. Yet, on the contrary, the donor may
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be choosing the best from a list of bad options, since it carries signif-
icantly less risk than working, for example, under harsh and
dangerous conditions, as well as offering them the pleasure of con-
tributing to the well-being of the recipient. Although the recipient may
be taking advantage of the donors difficult economic situation, this
will not improve by refusing donation.
(c) Paid donors are, in their majority, poor and less educated, thus possi-
bly unable to understand the risks involved. But someone could easily
argue that it is the physician’s duty to explain the whole procedure as
simply and clearly as possible, as well as to clarify every question
raised by the potential donor.
(d) Another argument against commercialization of donation is that the
rich will eventually have access to organs while the poor will not.
However, it is also a fact of life that since private health care exists,
the rich are able to buy better conditions of care than the poor.
(e) The sale of organs may also cause exploitation of donors and recipi-
ents by unscrupulous middlemen and surgeons. Yet, such practice
may increase even more in an illegal uncontrolled environment result-
ing in the provision of inferior medical care. The financial
exploitation of donors could be avoided if donation was supervised
and controlled by a national agency which would allocate organs
nationally according to best match and clinical need criteria as well as
maintain the anonymity of the donor-recipient relationship.
78
In such
setting, safety for the donor and the recipient would be guaranteed
with better pre-, intra- and postoperative care for them.
79
However, if
such a policy is applied on a larger scale it may lead to differences in
financial compensation between transplant centres and even countries
resulting in ‘donation tourism’ from poor to wealthy areas of the
world.
79
Other researchers have also proposed a closely regulated and
supervised market of organs, claiming that we do not regard this as
any the less a caring profession because doctors are paid.
80
Since the
long-term cost of renal transplantation is less compared to the patient
on dialysis, the government or medical insurance organizations would
save money. It has also been proposed
42
that wealthier patients could
make financial contributions to a general and independent fund
that would pay the potential donors, thus reducing the cost for the
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government even more. The initial selection and screening of the
potential donor could be performed by an independent physician and
then the transplant centre could have the right to reject them, after
consulting a specialist on medical ethics. The paid donor would not be
able to select a specific recipient. Others fear that rewarding donors
will potentially lead to an increase in the cost of transplantation since
those who now donate their kidneys altruistically might ask to be
compensated.
81
(f ) Another argument against commercial donation is that the poor donor
may be unable to handle their money well (compare with cases of lot-
tery winners
42
) thus making in the long-term no difference to their
poverty. The possibility of misuse of the money paid for donation,
although difficult to predict, could not justify overriding the donor’s
decision.
(g) Transplantation has always relied to the altruism of donors and paid
donation may lead to the disappearance of altruistic donation since it
is possible that eventually all donors will request to be paid.
(h) Even if we manage to regulate the sale of organs, there is always the
fear that some people will take it to the extreme; for example, the sto-
ries of Brazilian children, kidnapped and killed for their organs, as
well as stories of people being drugged and kidnapped, awaking in an
alley with a flank incision and a kidney missing.
(i) Others claim that living donation involves a ‘highly artificial enforced
altruism’ according to which everyone is paid, including the trans-
plant team, the transplant co-ordinator as well as the recipient who
gains an important benefit and only the donor is required to be altru-
istic.
80
However, we have to acknowledge that those involved
professionally with the transplant procedure do not receive extra pay-
ment for every transplant they perform and eventually it is their job to
perform it.
( j) We could consider the scenario of an impoverished father who has a
daughter ill with leukaemia. If his daughter experiences renal failure
he would want to donate her his kidney. It could be morally accept-
able in the eyes of some researchers
82
to sell his kidney in order to
earn money to pay for her treatment. However, the counterargument
is that in such cases a well-organized National Health Service should
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be able to provide the necessary resources and financial assistance for
them.
(k) Others
83
consider it an act of paternalism that the rich are free to
engage in dangerous sports for pleasure and the poor denied the
smaller risk of selling a kidney, which may even save another life and
help them with their financial situation. It is true that if kidney sales
are allowed rich people will have opportunities for medical care
unavailable to the poor, but this is a reality in many areas of medical
care around the world and by outlawing such sales the social
inequities will not be corrected.
84
Information about several types of commercial donation is already avail-
able, although centres involved in such a practice would be reluctant to
report results. One study looks at recipients who purchased a kidney in an
Arab country and had follow-up with nephrologists after returning home.
The results demonstrate a higher perioperative (6.2%) and three-month
mortality rate (12.3%), as well as an almost 12% lower one-year survival
rate (81.5%), when compared to the figures of non-related renal trans-
plantation performed in the Western countries.
85
In this study, although the
graft survival rate was similar to that of live unrelated transplants done in
other countries in the Middle East, there was higher incidence of serious
infections including HIV and Hepatitis B.
86
Another report on commercial
transplantation showed a high rate of serious complications for Palestinian
children suffering from end-stage renal disease who were transplanted in
Iraq.
87
In another more recent study concerning Tunisian patients who
purchased a kidney in Iraq (mean cost $10,000), Egypt and Pakistan, there
was a very high complication rate.
88
Although there is still an organ black
market in India, since dialysis is very expensive and cadaveric donations
very rare, we have an early example of a paid donation programme,
89
which was suspended after commercial donation was made illegal. In this
programme, before it became illegal, after careful screening of the donors,
where even 72% were rejected, a two-year graft survival similar for
related and unrelated donors was achieved. Those rejected were compen-
sated for their time and the eventual donors were offered free three-year
medical care. In Iran, there has been a compensated, controlled unrelated
living-donor transplantation programme since 1988, which resulted in the
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elimination of the renal transplant list by 1999.
90
In this programme, the
government pays all hospital expenses as well as provides the donor with
an award and health insurance, without involving any middlemen or
agency. Such a programme in the Middle-Eastern countries, where strong
cultural barriers exist against cadaveric donation and long-term dialysis is
unavailable or very limited, could reduce the over 50,000 annual deaths
due to end-stage renal disease.
91
In a recent survey in Hungary
92
63.3% of
those interviewed, who already had been donors in the past, were not in
favour of selling and buying organs, but, interestingly, they stated that if
they had end-stage renal failure they would have bought a kidney if one
had been available. Finally, there is great concern that no matter how well
regulated an ‘organ market’ is, dubious brokers would find a way to
bypass the regulated system and use other means to obtain a better price
for an organ with prospective ‘buyers’ bidding for the best, medically
most suitable one.
93
Donor rewards
Even if we reject commercialization of donation, the question remains:
should donors have any rewards at all? Most would agree that donors
should at least not suffer from their donation, thus certain reasonable
rewards are allowed. Researchers
19
have discovered that recipients and
potential recipients were unwilling to accept a kidney if this would inflict
any financial burden on the donors. Thus, if such a donor develops later
renal failure, it is suggested that he could be placed at the top of the
cadaveric kidney waiting list. He should also be provided with medical
insurance and reimbursed for any lost working hours or lost wages.
94
Who
could provide such compensation? It is generally accepted that this should
be done by some government authority such as the NHS.
33
In the UK there
are sophisticated mechanisms in place to calculate the loss of working
hours or loss of wages and to compensate the donors fairly.
In 2001, during the first session of the 107th US Congress, new leg-
islation was considered for the promotion of organ donation. It included
the presentation of commemorative medals to donors, the offer of tax
credits, as well as the reimbursement of travel and other expenses incurred
as a result of donation. Also, a 30-day paid medical leave for all federal
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and some state employees, who become donors, was established.
Moreover, the American Society of Transplantation (AST) is encouraging
transplantation centres to provide paid medical leave for employees who
become donors since they risk loss of wages or loss of employment.
75
The
University of Minnesota offered a small financial aid in its transplantation
programme intended to minimize donor expenses created by the proce-
dure.
95
Also in Pennsylvania the state proposed a plan to offer $300 to
organ donors and their families to be used only for expenses such as food,
housing and transportation.
96
The idea of non-cash rewards for donors might preserve the concept
of altruism. The Red Cross gives, for example, T-shirts, food and drinks
to those who donate blood but would not give their cash equivalent. The
foundations of our society, life and liberty are values that should not have
a monetary value. Thus, being awarded a medal or a certificate by the state
for their generous action could be enough. This could happen in official
ceremonies, thus gaining publicity through the media, which could further
promote donation. The obligation of medical follow-up and the possibil-
ity of free health insurance is also a considerable reward for donors,
expressing society’s gratitude for such altruistic acts. The obligation of
medical follow-up is also necessary in order to determine possible long-
term risks for the sake of future donors and even if they are proven not to
be in such a risk, their medical problems will be recognized and treated
earlier. In a study in France,
97
two-thirds of the centres performed annual
lifetime reviews for the donor, whereas the rest examined them once or
twice before referring them to their personal physician for annual check-
up (blood-pressure measurement, serum creatinine and screening for
proteinuria).
Surrogate consent
The statement of the Live Organ Donor Consensus Group (LODCG) in
2000, that the donor should be competent to consent, rejects the idea of
surrogates (patient’s family) to consent to organ retrieval from an incom-
petent adult, although such examples appear occasionally
98
and have even
been allowed.
99
In 1998, in Ohio, a judge ruled that a kidney could be
removed from a patient in coma and given to his brother; since the
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patient’s condition was irreversible, he could still live with one kidney and
there was evidence that he had expressed the will to become an organ
donor.
100
The family’s decision to donate the kidney of a patient who lacks
decision-making capacity is obviously not to the patient’s benefit since
they will probably never regain consciousness to realize the action. How
is it then possible to justify such an action? First of all, when family mem-
bers have proven that they are expressing the patient’s will, his autonomy
is respected. The adult in coma has a history of life choices, values and
priorities that can help his family decide. A legal analysis argues that sur-
rogates have to consider also the best interests of the family as a whole
when making such decisions.
101
A UCLA Medical Centre Ethics Committee
99
has proposed several
principles for surrogate consent: (a) the family members should be able to
prove that their decision is based on the patient’s will; (b) surrogates should
have no benefit from the donation except the satisfaction of their altruistic
act; (c) the procedure should not affect the clinical course of the donor;
(d) all the parties involved in the transplant procedure as well as those
involved with the donors care must believe that the donation is ethical and
(e) the consent should be evaluated by an independent multidisciplinary
body, such as an ethics committee, on a case-by-case basis.
Surrogate consent should be limited to patients with the least possi-
bility of recovery and those who will die following withdrawal of life
support. Such patients could be those in a permanent vegetative state
(PVS). When the vegetative state lasts more than one month in cases with
no injury, over three months in cases after non-traumatic injury and over
12 months in cases of traumatic injury, it is considered as permanent and
their median survival is approximately two to five years.
102
Yet, are we
able to determine whether a vegetative state is truly permanent? We can
consider as an example the recent report of a person who recovered par-
tially and started responding to questions after 19 years in coma.
103
That
is why the surrogate should base their decision on what the patient would
have chosen, regarding donation, if competent. Some
103
fear that allowing
surrogates to donate non-vital organs (e.g. kidneys) of terminally-ill
patients may undermine public trust in transplant programmes and expand
donation to other patient groups, such as Alzheimer patients. Thus, they
suggest that living-organ donation should be limited only to PVS patients.
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Paired-exchange programmes
Another possible way to increase the live-donor pool is the paired-
exchange programmes first suggested in 1986.
104
In such a programme
pairs of potential donors who are incompatible with their recipients donate
eventually to each others recipient. Through an exchange arrangement
between two donor-recipient pairs, donor A provides a kidney to (ABO-
compatible) recipient D and donor C provides a kidney to (ABO-compatible)
recipient B (Fig. 3).
105
Additionally, instead of direct exchange between
pairs, donations could be made through an exchange donor pool. Such a
programme was developed in Korea in 1991, resulting in a significant
7.3% increase of live-donor transplants.
106
The reasons for participating in
the paired-exchange process were ABO incompatibility (75.5%), poor
HLA-match (13.6%) and positive lymphocyte crossmatch (10.9%). The
US also have experience with ‘kidney swapping’.
107
In Europe paired-
exchange transplantations have been attempted only in Switzerland,
Romania and the Netherlands.
The consensus statement in 2000
32
stated that the meeting of the
donor-recipient pairs remains at their, as well as at the transplant centre’s,
discretion. A survey
108
performed among potential pairs participating in
Ethical Issues in Living Donor Transplantation 23
Situation 1
C
D
A
B
Situation 2
CA
DB
Figure 3: Paired-exchange programme. Live-donor kidney transplantation cannot hap-
pen for reasons such as blood group incompatibility between otherwise suitable donor and
recipient (donor A to recipient B). The same can potentially stand for another pair of donor
and recipient (donor C and recipient D). However if donor A gives a kidney to recipient D
and donor C to recipient B, both transplantations are possible. An exchange of kidneys
between two donor-recipient pairs.
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an exchange programme concluded that all preferred anonymity, instead
of becoming emotionally involved with others with similar health prob-
lems, avoiding psychological pressure that might result from acquaintance.
Others
105
have suggested that strict confidentiality should be maintained
for each donor-recipient pair because there is a possibility of frustration,
anger or resentment between the two pairs, in case one recipient does
not have such a good outcome as the other. It also suggested that both
procedures should be performed simultaneously in order to avoid the
possibility of one donor refusing after the other donor nephrectomy
procedure had already been performed. It has also been suggested that
in pair-exchange programmes, the psychological pressure on the donor
may be greater since they are asked to give a kidney to a stranger rather
than a loved one. Nonetheless, potential donors can understand that
their donation will benefit indirectly their loved ones. Another ethical
aspect of such a programme is the possibility of coercion since a reluc-
tant donor cannot use an excuse such as ABO incompatibility for not
donating. Thus, psychological evaluation should be more meticulous to
ensure that the donor is acting voluntarily. Yet, with the advances in
immunosuppression and plasma-exchange techniques, such programmes
may be unnecessary, since ABO- and HLA-crossmatch incompatible
transplants may be possible.
Minor donors
Another important issue under debate is whether minors, children younger
than 18 years old, should be allowed to donate. The majority of kidneys
transplanted to children come from their parents. However, this is not
always possible for medical or other reasons. Should minors be allowed
to donate to their siblings? From whom is consent required and who
should decide about such a transplant? What should the minimum age be
for donation?
There are some serious concerns about children donors. First of all,
a child may be unable to balance and comprehend the risks and benefits
of the procedure, thus may not be able to provide valid informed con-
sent. Also, children may feel coerced by parents to donate and have no
choice in the matter, risking parental love and support in that they go
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against their parents’ wishes. Furthermore, parents may face a conflict
of interests when a healthy child is considering donation in order to help
their ill child.
109
Finally, there are some extra risks, although limited, to
the child with one remaining kidney, such as risk for trauma, neoplasm
and infection that can alter their physical activity, and possibly their
choice of a career, for example limiting their ability in careers such as
athletics, the military, etc.
110
Preadolescent and adolescent years are very
important for the emotional, physical and intellectual development of a
minor, thus there should be good justification to interrupt this process
with an operation that is not medically required. We have to take into
account issues of postoperative convalescence and disruption of school,
activities, play, etc., which are essential in the daily life of a child at a
formative age.
There is a view that we must consider older and younger children sep-
arately.
109
According to this view, formal operational thought has usually
become well established in a child at about the age of 14, with adolescents
being as competent as adults to make decisions regarding their health.
In 1994, the Council on Ethical and Judicial Affairs of the American
Medical Association considered adolescents of 14 years old and above, as
mature enough to make decisions about their medical care, but this capac-
ity should be evaluated in each individual case. Thus, several states in the
US grant such ‘mature minors’ the right to provide consent to medical
treatment intended for their benefit.
109
Before accepting an adolescent’s
consent, competence should be evaluated by a skilled mental health pro-
fessional after consultation with the parents, who should also agree to
donation. In addition, the child’s competence should also be confirmed by
courts as recommended by the Council on Ethical and Judicial Affairs of
the American Medical Association. Data from this Council suggest that
parental influence on children’s decisions decreases as the children get
older. In a previous study,
111
comprising young donors (16–20 years old),
the vast majority appeared to be under no family pressure to donate and,
one year after donating, most of them had not regretted it. The aforemen-
tioned Council also recommended that health professionals and the courts
should also confirm that the adolescent is acting voluntarily. As Aaron
Spital postulated ‘although court involvement seems reasonable, it may be
that a determination of competency and voluntarism can be achieved less
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traumatically, more efficiently, and at least as accurately by qualified
health professionals alone’.
109
Regarding the risk of nephrectomy in childhood, a large study
112
con-
cluded that renal function is maintained for up to 50 years after unilateral
nephrectomy in childhood. Thus, it may be too restrictive for transplant
centres to accept kidney donors only over 18 years old. As Hamburger and
Crosnier pointed out, it is really difficult to accept an age limit beneath
which a minor is rejected as a donor since consideration should depend on
the psychological maturity rather than the chronologic age of the child.
113
As a result, some states in the US have started to legally accept the con-
sent of minors over 14 years old for organ and tissue donation, e.g. in
Alabama minors can consent for bone marrow donation and in Michigan
they can be kidney donors to immediate family members with court
approval.
109
However, it is very difficult to accept ‘immature’ minors (under
14 years old) as donors, since they are unable to make sound decisions
regarding their own health and their choices are influenced greatly by
their parents. On the other hand, one could argue that this approach is very
restrictive and under rare circumstances even young minors should be
allowed to donate.
109
Considering this approach, we must acknowledge
that legislation accepts an incompetent individual as a potential donor
only if donation is in the individual’s best interests and they benefit from
it. Similar psychological benefits for young children have been used by
courts as justifications for approving donations by minors, whereas these
benefits have actually been documented in a 7-year-old donor.
114
Some of
the benefits for a young child after donation could be: (a) avoiding trauma
caused by the death of a very close relative e.g. a sibling; (b) avoiding
future emotions of guilt for not donating; (c) increased self-esteem from
donation; (d) maintaining the integrity of the family in which they live.
109
However, we should always keep in mind that we can only speculate
rather than be certain about the psychological benefits to the child-donor.
That is the reason why the Council on Ethical and Judicial Affairs of the
American Medical Association has proposed that organ donation from an
‘immature’ minor potential donor should only be permitted if parents and
courts agree ‘that donation could provide a “clear benefit” to the donor’.
115
It is also recommended that the minor is evaluated by a child psychiatrist
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or psychologist and a guardian is appointed on the minors behalf to
ensure the protection of the child’s interests.
116
This procedure would
require stringent safeguards such as: (a) the child is the only available
organ source; (b) the transplant procedure has a very high possibility of
success; (c) the recipient will benefit from the transplant; (d) the recipient
is a close family member; (e) the potential donor will likely benefit from
the procedure; (f ) the risk of donation is extremely small; (g) the child
freely agrees to the procedure, requiring the child to be old enough for that
decision, probably over 7 years old.
109
Although these concepts reject a
definite ban on donation by young children, they limit greatly the number
of minors who can be considered as potential donors.
Surveys
109
that have been performed in transplant centres in the US
have demonstrated that the acceptance of children as live donors is
decreasing (Table 5) compared to the attitudes described in a previous
study
117
while there is great controversy regarding the issue of the donors
acceptable age (Fig. 4).
109
Finally, in the most recent of those studies,
109
the centres that would sometimes accept minors as donors required con-
sent from: parents (88%), the minor donor (75%), a court (69%) and an
appointed guardian (50%).
Conclusion
The many ethical issues regarding live-donor organ transplantation have
been under intense debate, with much controversy and a range of ideas
and practices existing between countries, transplant centres and physicians.
Ethical Issues in Living Donor Transplantation 27
Table 5: Attitudes towards the use of minors as live kidney donors among 99 responding
US transplant centres in 1989
117
and among 117 responding US transplant centres in
1997.
109
Would
Would consider not consider Did not answer
Donor source 1989 1997 1989 1997 1989 1997
Monozygotic twin 64% 42% 32% 56% 4% 2%
Non-twin sibling 43% 25% 53% 75% 4%
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Cultural, socioeconomic and demographic factors make those issues even
more complicated. However, we believe that, following an open and hon-
est debate involving all the interested parties, an agreement on certain
generally accepted principles can be achieved. Such an agreement will
safeguard the potential donors, recipients and their families and can only
boost the future of live-donor transplantation.
References
1. Dossetor JB, Daar AS. Ethics in transplantation: allotransplantation and xeno-
transplantation. In Kidney Transplantation. Principles and Practice. 5th edn.
Ed: P Morris. Philadelphia: WB Saunders Company. 2001, pp 732–44.
28 V. Papalois and E. Mazaris
0
10
20
30
40
50
60
70
80
90
100
NUMBER OF CENTRES
5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21
MINIMUM DONOR AGE
1989 1997
Figure 4: Minimum donor age acceptable by 74 responding US transplant centres in
1989
117
and by 143 responding US transplant centres in 1997.
109
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... Informed consent procedures vary per country, per center, and even per individual healthcare professional [3,4]. There are also many different guidelines outlining the matters that should be disclosed to potential donors, but the details are often not specified, and they can vary per guideline [5][6][7][8][9]. A recent study demonstrates that living kidney donors underestimate the complications and risks of a living kidney nephrectomy [10]. ...
... One of the next steps could be to evaluate the available guidelines [7][8][9], and update these where appropriate. For instance, the BTS guideline provides a clear overview of the literature on perioperative mortality and morbidity, but it presents just overall percentages of the major complications [7]. ...
... One of the next steps could be to evaluate the available guidelines [7][8][9], and update these where appropriate. For instance, the BTS guideline provides a clear overview of the literature on perioperative mortality and morbidity, but it presents just overall percentages of the major complications [7]. The KDIGO guidelines provide information on the long-term risks, but they are less specific on the perioperative complications [9]. ...
Article
Full-text available
Background: Informed consent for living kidney donation is paramount, as donors are healthy individuals undergoing surgery for the benefit of others. The informed consent process for living kidney donors is heterogenous, and the question concerns how well they are actually informed. Knowledge assessments, before and after donor education, can form the basis for a standardized informed consent procedure for live kidney donation. Methods: In this prospective, a multicenter national cohort study conducted in all eight kidney transplant centers in The Netherlands, we assessed the current status of the informed consent practice for live donor nephrectomy. All of the potential living kidney donors in the participating centers were invited to participate. They completed a pop quiz during their first outpatient appointment (Cohort A). Living kidney donors completed the same pop quiz upon admission for donor nephrectomy (Cohort B). Results: In total, 656 pop quizzes were completed (417 in Cohort A, and 239 in Cohort B). The average donor knowledge score was 7.0/25.0 ( 3.9, range 0–18) in Cohort A, and 10.5/25.0 ( 2.8, range 0–17.5) in Cohort B. Cohort B scored significantly higher on overall knowledge, preparedness, and the individual item scores (p < 0.0001), except for the long-term complications (p = 0.91). Conclusions: Donor knowledge generally improves during the live donor workup, but it is still quite disappointing. Long-term complications, especially, deserve more attention during living kidney donor education.
... According to these participants, the emphasis by health care providers that donation only benefits the donor minimizes what the donors perceived to be their generous and helpful action. The advice by health care providers is related to their ethical concerns about donations Mazaris & Papalois, 2003). The differing interpretation by participants was not identified in previous studies and should be examined in a larger sample, because this interpretation might not be limited to Black Americans. ...
... Some authors believe that donors do not actually perceive all the information given to them, but rather focus on positive aspects to reaffirm their decision (13). The question has been raised whether they actually understand all information provided to them, and it is argued that potential donors may not be fully informed at the time of consent (10,12,13,15,21). Although this theory is somewhat confirmed by donors retrospectively reporting that they did not feel adequately informed about (some) aspects of kidney donation (10,15), it has to be taken into account that the concept of live kidney donation has changed drastically since the 1970s. ...
Article
BACKGROUND: Informed consent in live donor nephrectomy is a topic of great interest. Safety and transparency are key items increasingly getting more attention from media and healthcare inspection. Because live donors are not patients, but healthy individuals undergoing elective interventions, they justly insist on optimal conditions and guaranteed safety. Although transplant professionals agree that consent should be voluntary, free of coercion, and fully informed, there is no consensus on which information should be provided, and how the donors' comprehension should be ascertained. METHODS: Comprehensive searches were conducted in Embase, Medline OvidSP, Web-of-Science, PubMed, CENTRAL (The Cochrane Library 2014, issue 1) and Google Scholar, evaluating the informed consent procedure for live kidney donation. The methodology was in accordance with the Cochrane Handbook for Interventional Systematic Reviews and written based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. RESULTS: The initial search yielded 1,009 hits from which 21 articles fell within the scope of this study. Procedures vary greatly between centers, and transplant professionals vary in the information they disclose. Although research has demonstrated that donors often make their decision based on moral reasoning rather than balancing risks and benefits, providing them with accurate, uniform information remains crucial because donors report feeling misinformed about or unprepared for donation. Although a standardized procedure may not provide the ultimate solution, it is vital to minimize differences in live donor education between transplant centers. CONCLUSION: There is a definite need for a guideline on how to provide information and obtain informed consent from live kidney donors to assist the transplant community in optimally preparing potential donors.
Article
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Öz: Bu çalışmanın amacı, üniversite öğrencilerinin benlik saygısı düzeyleri ve organ bağışı tutumları ilişkisini incelemektir. Araştırma örneklemini Sakarya Üniversitesi İşletme Fakültesi’nde okuyan 250 öğrenci oluşturmuştur. Veri toplama aracı olarak “Organ Bağışı Tutum Ölçeği”, “Benlik Saygısı Ölçeği” ve öğrencilere ait kişisel bilgi formu kullanılmıştır. Araştırma bulgularına göre organ bağışı ile ilgili bilgilerin en fazla görsel medya aracılığıyla elde edildiği görülmüştür. Üniversite öğrencilerin benlik saygısı orta düzeydedir. Benlik saygısı ile organ bağışı tutumu arasında pozitif yönde ve istatistiksel açıdan anlamlı ilişki bulunmuştur. Benlik saygısı, organ bağışı tutumunu olumlu yönde etkilemektedir. Üniversite öğrencilerin benlik saygısı düzeyleri artıkça organ bağışı tutum düzeylerinin de artacağı düşünülmektedir. Ayrıca organ bağışı tutum ölçeğinin alt boyutu olan altruistik değer ile cinsiyet, yaş ve sınıf arasında anlamlı bir farklılık bulunmuştur. Organ bağışı ile ilgili eğitimlerin yapılması, öneminin anlatılması, gençlerin bağış kampanyalarına katılması gibi faaliyetler öğrencilerin ve toplumun organ bağışı konusunda bilinçlenmesine ve farkındalıklarının artmasına yararlı olacaktır
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Altruistic donation (unspecified donation) is an important aspect of living donor kidney transplantation. Although donation to a stranger is lawful and supported in many countries, it remains uncommon and not actively promoted. Herein, we ask the question if we have reached the limit in altruistic donation. In doing so, we examine important ethical questions that define the limits of unspecified donation, such as the appropriate balance between autonomous decision-making and paternalistic protection of the donor, the extent of outcome uncertainty and risk-benefit analyses that donors should be allowed to accept. We also consider the scrutiny and acceptance of donor motives, the potential for commercialisation, donation to particular categories of recipients (including those encountered through social media) and the ethical boundaries of active promotion of unspecified kidney donation. We conclude that there is scope to increase the number of LD kidney transplants further by optimising existing practices to support and promote unspecified donation. A number of strategies including optimisation of the assessment process, innovative approaches to reach potential donors together with reimbursement of expenses and a more specific recognition of unspecified donation are likely to lead to a meaningful increase in this type of donation.
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Solid organ transplantation represents one of the most important achievements in history of medicine. Over the last decades, the increasing number of transplants has not been of the same extent of the number of patients in the waiting lists. Live donation has been implemented in order to reduce the gap between supply and demand. From an ethical standpoint, the donation process from a live donor seems to violate the traditional first rule of medicine—primum non nocere because inevitably exposes healthy persons to a risk in order to benefit another person. In the chapter will be presented the crucial role of ethics and specific ethical issues in the different forms of live donation, such as financial incentives for living donation, reimbursement in unrelated live donation, minor sibling-to-sibling organ donation. The ethical aspects of live donor organ transplantation are continuously evolving; in order to make this strategy more beneficial and lifesaving, everyone involved in the process should make every possible effort with in mind the best interests of the patients.
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Bu çalışmanın amacı, üniversite öğrencilerinin benlik saygısı düzeyleri ve organ bağışı tutumları ilişkisini incelemektir. Araştırma örneklemini Sakarya Üniversitesi İşletme Fakültesi’nde okuyan 250 öğrenci oluşturmuştur. Veri toplama aracı olarak “Organ Bağışı Tutum Ölçeği”, “Benlik Saygısı Ölçeği” ve öğrencilere ait kişisel bilgi formu kullanılmıştır. Araştırma bulgularına göre organ bağışı ile ilgili bilgilerin en fazla görsel medya aracılığıyla elde edildiği görülmüştür. Üniversite öğrencilerin benlik saygısı orta düzeydedir. Benlik saygısı ile organ bağışı tutumu arasında pozitif yönde ve istatistiksel açıdan anlamlı ilişki bulunmuştur. Benlik saygısı, organ bağışı tutumunu olumlu yönde etkilemektedir. Üniversite öğrencilerin benlik saygısı düzeyleri artıkça organ bağışı tutum düzeylerinin de artacağı düşünülmektedir. Ayrıca organ bağışı tutum ölçeğinin alt boyutu olan altruistik değer ile cinsiyet, yaş ve sınıf arasında anlamlı bir farklılık bulunmuştur. Organ bağışı ile ilgili eğitimlerin yapılması, öneminin anlatılması, gençlerin bağış kampanyalarına katılması gibi faaliyetler öğrencilerin ve toplumun organ bağışı konusunda bilinçlenmesine ve farkındalıklarının artmasına yararlı olacaktır. / The purpose of this study is to examine the relationship between university students’ self-esteem levels and organ donation attitudes. The research sample was composed of 250 students studying at Sakarya University Faculty of Business Administration. The “Organ Donation Attitude Scale”, “Self Respect Scale” and personal information form belonging to students were used as data collection tools. According to research findings, information about organ donation was obtained mostly via visual media. University students’ self-esteem is moderate. Positive and statistically significant relationships were found between self-esteem and organ donation attitude. Self-esteem affects organ donation positively. The level of self-esteem of university students is thought to increase with the level of organ donation attitude. In addition, there was a significant difference between altruistic value, which is the sub-dimension of organ donation attitude scale, and sex, age and class. Activities such as organ donation trainings, the explanation of the precepts, and the participation of young people in donation campaigns will be useful for raising awareness and awareness of the donations of the students and the community.
Chapter
This chapter focuses on the psychosocial evaluation, informed consent process, and follow-up post donation of unrelated organ donors, defined as individuals who are neither biologically related nor closely emotionally related to the transplant recipient. The impetus for considering unrelated donors is the growth in number and types of unrelated donors in the US in the past 20 years. In addition, there has been an expansion in the range of opportunities for unrelated donors to donate, including participation in kidney exchange programs. We consider the characteristics of unrelated donors that heighten the concerns of donor programs about donor psychosocial risks, and elements of the psychosocial screening and evaluation that require close scrutiny, including, for example, donors’ motives for donation, and their understanding and expectations about the donation process. We highlight elements that can complicate the informed consent process, including unique risks of coercion in unrelated donors, differences in the benefit-to-risk ratio for donation by unrelated vs. related donors, and special issues regarding confidentiality. We review evidence on post-donation outcomes in unrelated donors and issues that warrant consideration in follow-up with these individuals.
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Aim and objectivesTo investigate the perceived experiences and considerations among potential kidney transplantation donors in relation to acceptance or rejection as donors.Background Kidney transplantations are successfully performed in all Western countries, but the prevalence of patients waiting for organs from deceased donors far exceeds the number of organs available. This shortfall has promoted donation by living donors, who enter the donation process with feelings of hope, concern and patience to be accepted or rejected for donation.DesignA phenomenological-hermeneutic approach was applied in the study.Methods Semi-structured interviews were conducted with 16 participants. Data were interpreted and discussed in accordance with Ricoeur's theory of interpretation involving: naïve reading, structural analysis, critical interpretation and discussion.ResultsAccepted donors experienced relief and delight. Reflections were made on being prepared for donation and on the risks involved. Relationships between donors and recipients became closer. Rejected donors experienced frustration and disappointment, including anxiety about the recipient's prospects. Rejected donors reflected on the reason for rejection, and this could include considerations about changes to their own lifestyle. Reactions from relatives had an impact on donors.Conclusions The study concluded that both the accepted and rejected donors were vulnerable and in need of attention, engagement, support and care. The study draws attention to the need for healthcare professionals to be open and sensitive to the donors′ descriptions of their unique experiences of being accepted or rejected for kidney donation.Relevance to clinical practiceNurses should be aware that dialogue with donors, including reflections on experiences, is important to reduce and alleviate vulnerability and to give the best possible support and attention, including the opportunity to promote optimal postdonation outcomes.
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Although patients with end-stage renal disease (ESRD) can be successfully treated with haemodialysis or peritoneal dialysis, kidney transplantation is by far the best therapeutic option for the majority of patients with ESRD. Regretfully, the shortage in donor organs prevails. Despite an impressive societal and governmental investment, the number of deceased donor kidneys that becomes available for transplantation remains insufficient to meet the demand. One of the solutions to this problem is live kidney donation. The advantages of live donor kidney transplantation are numerous and include, among others, that it is an elective operation with short ischemia times. Furthermore, in this way, transplant professionals are able to select good quality kidneys of healthy donors. A uniform approach in the selection of live kidney donors is especially important since the community is seeking for options to further expand the donor pool. Currently, there is a tendency towards accepting so called ‘extended criteria live kidney donors’, which this thesis is about.
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Background. A resurgence of interest in the concept of live‐donor renal transplantation has prompted a closer look at methods of live donor evaluation, selection, and follow‐up. The aim of this study was to describe these methods in all 46 French renal transplant centres. Methods. Questionnaires were sent to all chief renal physicians. Results. The survey was completed by 78% of centres, which accounted for 95% of all live‐donor renal transplants carried out in France in 1995 and 1996. There was a substantial variation in all three steps of live‐donor management. For example, we observed variations in the screening for specific short‐ or long‐term risk factors (especially cardiovascular or thrombotic risk factors and diabetes). In addition the exclusion criteria differed, especially the cut‐off age for donation, which ranged from 45 to 75 years. The composition of teams evaluating and selecting potential donors and the role of the potential donors in the decision‐making process varied greatly among centres. Finally, we observed less variation in the methods of donor follow‐up. Conclusions. The current survey revealed a marked disparity in the management of live donors in France. It raises the question of whether these practices should be codified into a set of guidelines for live‐donor transplantation.
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The donor organ shortage has been one of the major barriers to kidney transplantation in Korea, even though there has been a small but steady flow of cadaveric kidney donations for the last decade. To expand the donor pool in kidney transplantation, we have developed the exchange donor program at our institution and in Korea. The donor exchange program was first started for end-stage renal disease patients who had willing but incompatible related donors due to positive lymphocyte cross-match. The kidney transplantations were performed using exchanged kidneys between two families with successful results. Since this success, we have expanded the donor pool by accepting close relatives, spouses, friends of recipients, and willing voluntary donors as candidates for exchange donors with careful donor screening procedures. It helps relieve stress on donor supply. Particularly in those countries where brain death has not been socially or legally accepted, living donors including related, unrelated, and exchange donors should be considered as potential donors for kidney transplantation to relieve the pressure on donor organ shortage.
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Inspired by Sweetness and Power, in which Sidney Mintz traces the colonial and mercantilist routes of enslaving tastes and artificial needs, this paper maps a late‐20th‐century global trade in bodies, body parts, desires, and invented scarcities. Organ transplant takes place today in a transnational space with surgeons, patients, organ donors, recipients, brokers, and intermediaries—some with criminal connections—following new paths of capital and technology in the global economy. The stakes are high, for the technologies and practices of transplant surgery have demonstrated their power to reconceptualize the human body and the relations of body parts to the whole and to the person and of people and bodies to each other. The phenomenal spread of these technologies and the artificial needs, scarcities, and new commodities (i.e., fresh organs) that they inspire—especially within the context of a triumphant neoliberalism—raise many issues central to anthropology's concern with global dominations and local resistances, including the reordering of relations between individual bodies and the state, between gifts and commodities, between fact and rumor, and between medicine and magic in postmodernity.
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It remains unclear whether preemptive transplantation is beneficial. and if so. who benefits. A total of 38.836 first. kidney-only transplants between 1995 and 1998 were retrospectively studied. A surprising 39% of preemptive transplants were from cadaver donors, and the proportions of cadaver donor transplants that were preemptive changed little. from 7.3% in 1995 to 7.7% in 1998. Preemptive transplants using cadaver donors were more likely among recipients aged 0 to 17 yr versus 18 to 29 yr (odds ratio [OR]. 2.48; 95% confidence interval [CI], 1.94 to 3.17), white versus black (OR, 2.33; 95% Cl, 2.03 to 2.68), able to work versus unable to work (OR, 1.42; 95% Cl, 1.26 to 1.61). covered by private insurance versus Medicare (OR. 4.77: 95% CI, 4.26 to 5.32), or recipients with a college degree versus no college degree (OR, 1.34; 95% Cl, 1.17 to 1.54). Preemptive transplants were less likely for Hispanics versus non-Hispanics (OR. 0.57; 95% Cl, 0.50 to 0,67), patients with type 2 versus type 1 diabetes (OR. 0.76: 95% Cl, 0.61 to 0.96), and for 2 to 5 HLA mismatches compared with 0 HLA mismatches (OR range, 0.77 to 0.82). In adjusted Cox proportional hazards analysis, the relative risk of graft failure for preemptive transplantation was 0.75 (0.67 to 0.84) among 25.758 cadaver donor transplants and 0.73 (0.64 to 0.83) among 13,078 living donor transplants, compared with patients who received a transplant after already being on dialysis. Preemptive transplantation was associated with a reduced risk of death: 0.84 (0.72 to 0.99) for cadaver donor transplants and 0.69 (0.56 to 0.85) for living donor transplants. Thus, preemptive transplantation, which is associated with improved patient and graft survival. is less common among racial minorities, those who have less education. and those who must rely on Medicare for primary payment. Alterations in the payment system, emphasis on early referral, and changes in cadaver kidney allocation could increase the number of patients who benefit from preemptive transplantation.
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Commercial renal transplantation is widely condemned on moral and ethical grounds. Moreover, previous studies involving small numbers of patients, mostly from tertiary care centers, have reported poor patient and graft survival. The Living Non-Related Renal Transplant Study Group was established to determine the overall results and complications in a large number of patients who received this type of transplantation in India. In this study we retrospectively collected data from 22 centers on 540 patients who had received commercial renal transplantation (CRT) in India between 1978 and 1993. The data collected included demographic characteristics of patients, the primary renal disease, dialysis and pretransplant data, immunosuppressive regimen, rejection episodes, post-transplant data, as well as patient and graft outcomes. Results were compared with those of 75 recipients of emotionally related renal transplantation (ERT) performed in two participating institutions in the Middle East. Among the 540 patients, 7.5% were younger than 20 yr of age and 14.2% were 50 yr of age or older. After adjusting for several variables, the 1-, 3-, and 5-yr patient survival rates in the CRT were 97, 94, and 92%, and in the ERT 95, 91, and 91% respectively (p = 0.4921). The corresponding rates for graft survival were 90, 81, and 72%, and 90, 86, and 83%, respectively (p = 0.5336). There was a higher incidence of human immune deficiency virus (HIV) infection (4.6% vs. 0% p = 0.053), and hepatitis B virus (HbsAg) infection rate (8.1% vs. 1.4% p = 0.03) in CRT. In conclusion, patient and graft survival rates in recipients of commercial renal transplantation are similar to those in recipients of emotionally related transplantation done in our institutions. However, the incidence of serious infections with HIV and HbsAg is significantly higher.
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To the Editor: We wish to correct data related to the long-term survival of patients in the persistent vegetative state. In our report,¹ estimates of the long-term survival of such patients were based on data from four published series.²â€“⁵ The number of patients (251) and the cumulative three-year (82 percent) and five-year (95 percent) mortality rates were miscalculated. The correct number of patients is 267, with mortality rates of 70 percent at three years and 84 percent at five years. We do not believe that this error changes the meaning or interpretation of any of the statements in the. . .
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Short- and long-term patient and graft survival rates are better for living donor (vs. cadaver) kidney transplant recipients. However, donor nephrectomy is associated with at least some morbidity and mortality. We have previously estimated the mortality of living donor nephrectomy to be 0.03%. In our present study, to determine associated perioperative morbidity, we reviewed donor nephrectomies performed at our institution from January 1, 1985, to December 31, 1995. The records of 871 donors were complete and available for review. Of these donors, 380 (44%) were male and 491 (56%) were female. The mean age at the time of donation was 38 years (range: 17-74 years), and mean postoperative stay was 4.9 days (range: 2-14 days). We noted two (0.2%) major complications: femoral nerve compression with resulting weakness, and a retained sponge that required reexploration. We noted 86 minor complications in 69 (8%) donors: 22 (2.4%) suspected wound infections (only 1 wound was opened), 13 (1.5%) pneumothoraces (6 required intervention, 7 resolved spontaneously), 11 (1.3%) unexplained fevers, 8 (0.9%) instances of operative blood loss > or = 750 ml (not associated with other complications), 8 (0.9%) pneumonias (all of which resolved quickly with antibiotics alone), 5 (0.6%) wound hematomas or seromas (none were opened), 4 (0.5%) phlebitic intravenous sites, 3 (0.3%) urinary tract infections, 3 (0.3%) readmissions (2 for pain control and 1 for mild confusion that resolved with discontinuation of narcotics), 3 (0.3%) cases of atelectasis, 2 (0.2%) corneal abrasions, 1 (0.1%) subacute epididymitis, 1 (0.1%) Clostridium difficile colitis, 1 (0.1%) urethral trauma from catheter placement, and 1 (0.1%) enterotomy. At our institution, no donor died or required ventilation or intensive care. We noted no myocardial infarctions, deep wound infections, or reexplorations for bleeding. Analysis, by logistic regression, identified these significant risk factors for perioperative complications: male gender (vs. female, P<0.001), pleural entry (vs. no pleural entry, P<0.004), and weight > or = 100 kg (vs. < 100 kg, P<0.02). Similar analysis identified these significant risk factors for postoperative stay > 5 days: operative duration > or = 4 hr (vs. < 4 hr, P<0.001) and age > or = 50 years (vs. < 50 years, P<0.001). Living donor nephrectomy can be done with little major morbidity. The risks of nephrectomy must be balanced against the better outcome for recipients of living donor transplants.
Article
Objective To recommend practice guidelines for transplant physicians, primary care providers, health care planners, and all those who are concerned about the well-being of the live organ donor.Participants An executive group representing the National Kidney Foundation, and the American Societies of Transplantation, Transplant Surgeons, and Nephrology formed a steering committee of 12 members to evaluate current practices of living donor transplantation of the kidney, pancreas, liver, intestine, and lung. The steering committee subsequently assembled more than 100 representatives of the transplant community (physicians, nurses, ethicists, psychologists, lawyers, scientists, social workers, transplant recipients, and living donors) at a national conference held June 1-2, 2000, in Kansas City, Mo.Consensus Process Attendees participated in 7 assigned work groups. Three were organ specific (lung, liver, and kidney) and 4 were focused on social and ethical concerns (informed consent, donor source, psychosocial issues, and live organ donor registry). Work groups' deliberations were structured by a series of questions developed by the steering committee. Each work group presented its deliberations to an open plenary session of all attendees. This information was stored and shaped into a statement circulated electronically to all attendees for their comments, and finally approved by the steering committee for publication. The term consensus is not meant to convey universal agreement of the participants. The statement identifies issues of controversy; however, the wording of the entire statement is a consensus by approval of all attendees.Conclusion The person who gives consent to be a live organ donor should be competent, willing to donate, free from coercion, medically and psychosocially suitable, fully informed of the risks and benefits as a donor, and fully informed of the risks, benefits, and alternative treatment available to the recipient. The benefits to both donor and recipient must outweigh the risks associated with the donation and transplantation of the living donor organ.