The use of social media to communicate death and dying extends this further with more people voicing their grief and loss in powerful Facebook posts and essays. Those who know they are going to die from having a terminal illness have used social medi
Facebook is a social networking site used to stay in touch and connect with friends and family members. Facebook was launched in February 2004 and is …
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Neoliberalism, Social Policies and Media: Media Coverage of Social Policies in Turkey A. Fulya SEN1 The term ''neo-liberalism''denotes new forms of the political-economic governance in the
In order to complete the missing number of surveys a call center studio was launched. The study was nationwide, as all the Marshal's Office were invited to participate. Consent to ... Internet forums on health or in moderating online forum or consult
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Social Media and MusicSocial Media and Music “Amy Kuney's "All Downhill From Here" has been listened to nearly 250,000 times on her Myspace page.Kuney, whi i fho is 25, is part of a new class of musicians who are bushwhacking their way to success
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syndrome. The present study aims to provide in this by examining to what degree Klinefelter syndrome is associated with abnormal-ities in a) empathy â¦
Original citation: Moorlock, Greg and Draper, H. (2018) Empathy, social media and directed altruistic living donation. Bioethics . doi:10.1111/bioe.12438 Permanent WRAP URL: http://wrap.warwick.ac.uk/85261 Copyright and reuse: The Warwick Research Archive Portal (WRAP) makes this work of researchers of the University of Warwick available open access under the following conditions. This article is made available under the Creative Commons Attribution 4.0 International license (CC BY 4.0) and may be reused according to the conditions of the license. For more details see: http://creativecommons.org/licenses/by/4.0/ A note on versions: The version presented in WRAP is the published version, or, version of record, and may be cited as it appears here. For more information, please contact the WRAP Team at: [email protected]
Received: 24 March 2016
Revised: 8 October 2017
Accepted: 27 November 2017
DOI: 10.1111/bioe.12438 bs_bs_banner
Empathy, social media, and directed altruistic living organ donation Greg Moorlock
Correspondence Heather Draper, Warwick Medical School, University of Warwick, Gibbet Hill, Coventry, CV4 7AL, UK. Email: [email protected]arwick.ac.uk
Abstract In this article we explore some of the ethical dimensions of using social media to increase the number of living kidney donors. Social media provides a platform for changing non-identifiable ‘statistical victims’ into ‘real people’ with whom we can identify and feel empathy: the so-called ‘identifiable victim effect’, which prompts charitable action. We examine three approaches to pro-
Funding information ESRC (in partnership with AHRC, EPSRC, Dstl and CPNI) under its EMoTICON call (Grant reference: ES/M00354X/1)
moting kidney donation using social media which could take advantages of the identifiable victim effect: (a) institutionally organized campaigns based on historical cases aimed at promoting nondirected altruistic donation; (b) personal case-based campaigns organized by individuals aimed at promoting themselves/or someone with whom they are in a relationship as a recipient of directed donation; (c) institutionally organized personal case-based campaigns aimed at promoting specific recipients for directed donation. We will highlight the key ethical issues raised by these approaches, and will argue that the third option, despite raising ethical concerns, is preferable to the other two. KEYWORDS
altruism, empathy, kidney, organ donation, social media, transplant
1 | BACKGROUND
listed for transplants will never be offered a kidney, and worldwide, thousands of people die each year waiting for a kidney transplant. New
Patients on the kidney transplant waiting lists face an uncertain future,
ways to increase the number of successful kidney transplants are con-
with long waiting times and extended periods of dialysis treatment
stantly being explored. One such way is to increase the number of
being typical experiences. Kidney transplantation is perceived to offer
donors, which can be achieved by increasing the number of deceased
significant benefit, in terms of both long-term survival1 and quality of
donors, or increasing the number of living donors.
life for recipients and, because of its cost-effectiveness in comparison
The former is limited by the manner in which people die, what pre-
to dialysis,3 to the welfare systems more generally. Many of those
cipitated death and whether consent is obtained. Patients have to die in relatively controlled circumstances for donation to proceed,4 and
1 Oniscu, G. C., Brown, H., & Forsythe, J. L. (2005). Impact of cadaveric renal transplantation on survival in patients listed for transplantation. Journal of the American Society of Nephrology, 16(6), 1859–1865.
some conditions, such as cancer, may be regarded as contraindications for donation.5 Regardless of donation consent rates, relatively few people die in circumstances compatible with donation. Medical advances
Liem, Y. S., Bosch, J. L., & Myriam Hunink, M. (2008). Preference-based quality of life of patients on renal replacement therapy: A systematic review and meta-analysis. Value in Health, 11(4), 733–741, Wyld, M., Morton, R. L., Hayen, A., Howard, K., & Webster, A. C. (2012). A systematic review and meta-analysis of utility-based quality of life in chronic kidney disease treatments. PLoS Medicine, 9(9), e1001307. 3 Barnieh, L., Gill, J. S., Klarenbach, S., & Manns, B. J. (2013). The costeffectiveness of using payment to increase living donor kidneys for transplantation. Clinical Journal of the American Society of Nephrology, 8(12), 2165–2173.
have made it possible to expand the eligibility criteria for donation, to 4
Barber, K., Falvey, S., Hamilton, C., Collett, D., & Rudge, C. (2006). Potential for organ donation in the united kingdom: Audit of intensive care records. BMJ, 332(7550), 1124–1127.
Israni, A., Zaun, D., Bolch, C., Rosendale, J., Snyder, J., & Kasiske, B. (2016). Deceased organ donation. American Journal of Transplantation, 16(S2), 195–215.
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. C 2018 The Authors Bioethics Published by John Wiley & Sons Ltd V
include older patients or those with certain morbidities that would pre-
2. To maximize patient benefit by ensuring that all suitable recipients
viously have precluded donation. The so-called ‘marginal’ organs from
have equity of access to LDKT and that the principle of ‘transplant
expanded criteria donors tend to produce worse outcomes for patients
first’ is embedded in best clinical practice across the United
than non-marginal organs,6 so although more patients receive trans-
plants, increased reliance on marginal organs is an imperfect solution to
3. To maximize the opportunities for suitable donors and recipients
the organ shortage.
to contribute to and benefit from the shared living donor pool by
The number of living kidney donors is less constrained by ability to
ensuring that the National Living Donor Kidney Sharing Schemes
donate—the proportion of healthy adults who could potentially donate
are both clinically and cost-effective.
a kidney is greater than the number of those who die in circumstances compatible with donation. Instead, the number of people willing to
As the immediate risks associated with LKD have decreased, the use of
donate is the limiting factor. This is unsurprising—a healthy person may
living donors has apparently become more acceptable, particularly where
be reluctant to undergo surgery that is of no clinical benefit to them,
kidneys are donated to close family members.11 ‘Altruistic’ LKD, where
and the majority of living donors, in most countries, donate to their
the donor is not related to the recipient, nor a friend of long-standing,
family or close friends. The immediate risk of mortality associated with
remains controversial,12 with concerns raised about the motivations of
living kidney donation (LKD) is very low (one study suggests 3.1 deaths
people willing to undergo surgery in order to help strangers, the extent to
per 10,000 donors in the 90 days following donation7), but it is none-
which donation could be in a healthy person’s best interests, and corre-
theless a greater risk than not donating. There are also risks of morbid-
spondingly whether participation in living donation contravened the pri-
ities (including a greater risk of end-stage renal disease ), and there are
mary duty of doctors to ‘do no harm’. The number of altruistic donations
the burdens of donation (potentially loss of income, discomfort, and so
is generally increasing, and the fact that altruistic LKD no longer requires
forth) to consider. Moreover, people may not be aware of the need for
additional psychiatric assessment,13 and is mentioned in NHSBT strategy,
more kidney donors, or that they could be a living donor, or they may
suggests that it is becoming less controversial.
regard the shortfall in kidneys as somebody else’s problem.
Exposing healthy people to any risk seems non-ideal when there is
Kidneys from living donors tend to produce better transplant out-
an adequate alternative that exposes them to no risk. So although in
comes than kidneys from deceased donors,9 and the large pool of
this article we will explore how social media could be used to increase
potential donors means that the benefits of promoting living donation
rates of LKD, we do so on the assumption that significant efforts
would be significant for recipients. In the United Kingdom, National
should also be made to increase deceased donation with the ultimate
Health Service Blood and Transplant (NHSBT) is responsible for policy
goal being to arrive at a situation where LKD is unnecessary. The
in relation to transplantation. NHSBT has published a strategy docu-
NHSBT strategy presupposes that it is currently desirable to increase
ment for increasing LKD, outlining several goals and outcomes and
rates of LKD, so in this article we explore the role of social media in
how these will be achieved.10 Its key aims are as follows:
achieving this aim.
1. To increase living donation kidney transplantation (LDKT) activity for both adult and paediatric recipients, ensuring that donor safety and welfare is consistently sustained through best clinical practice.
2 | MEDIA CAMPAIGNS AND SOLICITING EMPATHY Given the potential risks and burdens, becoming a living donor requires
Saidi, R., Elias, N., Kawai, T., Hertl, M., Farrell, M. L., Goes, N., . . . Ko, D. S. (2007). Outcome of kidney transplantation using expanded criteria donors and donation after cardiac death kidneys: Realities and costs. American Journal of Transplantation, 7(12), 2769–2774. Aubert, O., Kamar, N., Vernerey, D., Viglietti, D., Martinez, F., Duong-Van-Huyen, J.-P., . . . Loupy, A. (2015). Long term outcomes of transplantation using kidneys from expanded criteria donors: Prospective, population based cohort study. BMJ, 351, h3557. 6
7 Segev, D. L., Muzaale, A. D., Caffo, B. S., Mehta, S. H., Singer, A. L., Taranto, S. E., . . . Montgomery, R. A. (2010). Perioperative mortality and long-term survival following live kidney donation. JAMA, 303(10), 959–966. 8
Muzaale, A. D., Massie, A. B., Wang, M.-C., Montgomery, R. A., McBride, M. A., Wainright, J. L., & Segev, D. L. (2014). Risk of end-stage renal disease following live kidney donation. JAMA, 311(6), 579–586. 9 Matas, A., Smith, J., Skeans, M., Thompson, B., Gustafson, S., Stewart, D., . . . Kasiske, B. L. (2015). Optn/srtr 2013 annual data report: Kidney. American Journal of Transplantation, 15(S2), 1–34. 10
NHS Blood and Transplant. (2014). Living donor kidney transplantation 2020: A UK strategy. Retrieved from http://www.nhsbt.nhs.uk/download/ board_papers/may14/Living-Kidney-Donor-transplantation-2020-A-UKStrategy.pdf
a greater degree of motivation than registering a desire to be a donor after one’s death. The promotion of living donation to help a stranger may therefore require more than simply raising awareness; and may also need to provide an individual with sufficient motivation to volunteer. Joining a deceased organ donor register (ODR) commits one to being a ‘hypothetical’ organ donor; most people who join will never go on to donate organs because so few will die in circumstances compatible with donation. When one volunteers for LKD, there is a good chance that the offer will be taken up. To be effective, therefore, the promotion of living donation must not just generate support for a worthy cause, but ensure that this support is followed up with a donation. 11 Live Organ Donor Consensus Group. (2000). Consensus statement on the live organ donor. JAMA, 284, 2919–2926. 12
Truog, R. D. (2005). The ethics of organ donation by living donors. New England Journal of Medicine, 353(5), 444–446. 13
Human Tissue Authority. (2015). Guidance to transplant teams and independent assessors. Retrieved from https://www.hta.gov.uk/sites/default/files/ Guidance_to_Transplant_Teams_and_Independent_Assessors%20(1)_0.pdf
Throughout this article we will draw a distinction between two
living donation is at least partly other-regarding, so if empathy can result
broad approaches to promoting LKD. First, the ‘awareness-raising’
in other-regarding behaviour, one can reasonably speculate that increas-
approach, based on the provision of generalized information and statis-
ing the empathy felt for potential kidney recipients could lead to an
tics regarding the need for, and benefits of, organ donation. Second, the
increased number of kidney donations.
‘personalized’ approach, where there is a much greater emphasis on a
Moreover, although the concept remains disputed, some psycho-
specific patient’s need for a transplant and a potential donor’s ability to
logical research suggests the existence of an ‘identifiable victim
help that specific person. Awareness-raising has long been the approach
effect’,19 where people act differently towards identifiable victims than
used to promote deceased donation. This has generally taken the form
to non-identified ‘statistical victims’. Considering the perspectives of
of campaigns, where, via various channels, the public are told about the
others is a necessary precondition for empathic emotional responses to
number of people waiting for transplants and the benefits that organ
situations,20 and it is easier to consider or assume the perspective of
donation can provide. Awareness-raising via delivery of statistics and
another person when they are an identified individual, rather than a
education has not resulted in sufficient kidney donations for everyone
mere statistic. It has been claimed that ‘[i]dentifiable victims seem to
who needs one. A more personalized approach has also been used, but
produce a greater empathic response, accompanied by greater willing-
has proven controversial. The 2008 ‘Kill Jill’14 campaign in Scotland was
ness to make personal sacrifices to provide aid’.21 One example of this
controversial in part because it traded on emotion, using an apparently
effect is the response to photos of the drowned Syrian refugee child,
identifiable individual and giving the audience 20 s to decide whether or
Aylan Kurdi, which ‘went viral’ on social media.22 Although the refugee
not to save her. Such advertising efforts have generally focussed on
crisis had been ongoing for some time prior to Aylan’s death, and it
increasing rates of deceased donation, but NHSBT’s new strategy to pro-
was widely known that many people, including children, were dying
mote living donation signifies a departure from this.
while trying to flee to safety, the widespread publication of photos
Some organ donation campaigns have featured individual ‘case stud-
with an identifiable victim resulted in a notable (short term, at least)
ies’ of people waiting for transplants, explaining their situations and high-
change in attitudes from the public, the press, and politicians. One can
lighting the benefits that a transplant could provide—sometimes called
appeal to people by providing facts, figures, and impartial generalized
‘stories of hope’.15 The use of case studies is presumably intended to
reports, but something that prompts a stronger and immediate emo-
appeal to people by making the human impact of the organ shortage
tional reaction may be more effective at motivating them to provide a
clearer, with the aim of generating empathy in order to motivate people
solution. There is a scarcity of empirical research on this approach
to take action to help. ‘Empathy’ can describe many complex phenomena,
within the context of organ donation,23 but using ‘identifiable victims’
but is most commonly used to refer to ‘affective empathy’, defined as
within a personalized approach to promoting donation may therefore
‘feeling the way another feels, or having congruent emotion, because the
be an effective way to increase LKD.
other feels that way’.
This form of empathy includes the perspective-
taking common to other forms (e.g., cognitive empathy), but is distinct by virtue of the emotional reaction to the assumed mental state of another.
3 | IS THE PERSONALIZED APPROACH MANIPULATIVE?
The empathy–altruism hypothesis widely described and evidenced in psychological literature suggests that empathic concern for another can
Appealing to emotion rather than directly to people’s rational capacities
lead to altruistic motivation to further that other’s welfare.17 Although
may raise concerns about manipulation, but allowing emotion to play a
the precise nature of the altruism that motivates organ donation is
motivating role in donation is nothing new. Motivation for living dona-
debated,18 it is reasonable to assume that the motivation behind most
tion between family members, for instance, is likely to involve a
Scottish Government. (2008). Kill jill - Organ donation. Retrieved from https://www.youtube.com/watch?v5raMabDzN12s
Organ Donation Scotland. (2016). Stories of hope. Retrieved from https:// www.organdonationscotland.org/discuss-share/stories-of-hope. Donate Life North Carolina. (2016). Stories of hope. Retrieved from https://www.donatelifenc.org/stories-hope. United Network for Organ Sharing. (2016). Stories of hope. Retrieved from https://www.unos.org/transplantation/stories-of-hope.
Kauppinen, A. (2014). Empathy, emotion regulation and moral judgment. In H. L. Maibom (Ed.), Empathy and morality. Oxford: Oxford University Press.
Batson, C. D. (2011). Altruism in humans. New York: Oxford University Press. Toi, M., & Batson, C. D. (1982). More evidence that empathy is a source of altruistic motivation. Journal of Personality and Social Psychology, 43(2), 281. Feigin, S., Owens, G., & Goodyear-Smith, F. (2014). Theories of human altruism: A systematic review. Annals of Neuroscience and Psychology, 1(1), 1–19.
Moorlock, G., Ives, J., & Draper, H. (2014). Altruism in organ donation: An unnecessary requirement? Journal of Medical Ethics, 40(2), 134–138, Saunders, B. (2012). Altruism or solidarity? The motives for organ donation and two proposals. Bioethics, 26(7), 376–381, Wilkinson, T. (2007). Racist organ donors and saving lives. Bioethics, 21(2), 63–74.
Small, D. A., & Loewenstein, G. (2003). Helping a victim or helping the victim: Altruism and identifiability. Journal of Risk and Uncertainty, 26(1), 5–16. 20 Kogut, T., & Ritov, I. (2005). The “identified victim” effect: An identified group, or just a single individual? Journal of Behavioral Decision Making, 18 (3), 157–167. 21 Jenni, K., & Loewenstein, G. (1997). Explaining the identifiable victim effect. Journal of Risk and Uncertainty, 14(3), 235–257. 22
Smith, H. (2015). The guardian - Shocking images of drowned Syrian boy show tragic plight of refugees. Retrieved from http://www.theguardian.com/ world/2015/sep/02/shocking-image-of-drowned-syrian-boy-shows-tragicplight-of-refugees. 23
Some research has found that providing anonymized demographic characteristics of potential organ recipients increased likelihood to register as a deceased donor (see: Singh, M., Katz, R. C., Beauchamp, K., & Hannon, R. (2002). Effects of anonymous information about potential organ transplant recipients on attitudes toward organ transplantation and the willingness to donate organs. Journal of Behavioral Medicine, 25(5), 469–476), but we are unaware of research relating to living donation.
significant emotional component.24 The same is also true when deci-
influence compromises some conceptions of autonomy.30 Although it
sions are made by families in relation to deceased donation; there is no
seems unlikely that appealing to empathy to promote organ donation is
requirement that these decisions must be made completely rationally,
coercive, as no obvious restrictions are placed on a potential donor’s
absent emotion. Emotional responses may even sometimes promote
choices, influencing people in this way could be considered to compro-
rational decision-making. Feeling distressed because another person
mise their autonomy to a lesser extent.
feels distressed, for example, could prompt appropriate other-regarding
Faden, Beauchamp, and King argue that the extent to which a per-
concern.25 Despite this, deliberately provoking an emotional reaction
son’s autonomy is compromised depends on how difficult the manipu-
to motivate living donation may be different from allowing emotion to
lated person finds it to resist, and how much the non-rational influence
play a role in donation. It is generally accepted that a decision to
interferes with the manipulated person’s substantial understanding of
become a living donor should be informed and made freely without
the issue at hand.31 In the case of organ donation messages, an appeal
coercion, and this may appear to discount intentional manipulation of
to emotions such as empathy can be considered to ‘direct the agent’s
attention towards a set of options and make them salient’,32 rather
Any marketing material designed to promote organ donation is
than directing someone down an entirely manipulated pathway. One
attempting to make people act in a certain way, but this is not always
remains free to deliberate and reflect upon the information provided,
ethically problematic. Black and Forsberg suggest that objections on
and to decide for oneself which course of action to take without exter-
the grounds of manipulation comprise two claims. First, a descriptive
nal pressure. Even if one’s motivation to initially come forward as a
claim that someone induces someone else to do something. And sec-
potential donor was prompted solely by a spontaneous and uncontrol-
ond, an evaluative claim that this is done in an unethical way.26 So
lable outpouring of empathic emotion, the protracted process of work-
while advertising for organ donors is descriptively manipulative—as
up for donation makes it unlikely that one would get to the point of
highlighted by Black and Forsberg, it would be extremely wasteful to
donating without reflecting on one’s decisions. For these reasons, using
use resources if the aim were not to change behaviour27—it is not nec-
a personalized approach and prompting empathic responses with the
essarily manipulative in the evaluative sense. For the purposes of this
aim of promoting organ donation does not seem unduly manipulative.
discussion, we will assume that something is manipulative in the evaluative sense if it significantly undermines autonomy.28 The important question, therefore, is whether donation influenced, in part, by emotion can be considered sufficiently autonomous. Although there are many competing accounts of autonomy, common to all of them is a general sense of self-governance, so external
Similar claims have been defended elsewhere in the context of famine relief.33 This is not to say that such personalized appeals could not be manipulative (putting a seriously ill patient and their distressed family in the same room as a potential donor and asking the potential donor to donate might quite rightly be considered manipulative) but we will only be discussing options at the other end of the spectrum.
influence is naturally likely to be in some tension with this. BlumenthalBarby presents a schema of influence, including (ordered from the least to the most morally problematic) (a) reason and argument, (b) nonargumentative influence (reason-bypassing type), (c) non-argumentative influence (reason-countering type), (d) omission, and (e) force or severe threats. The mid-point, ‘non-argumentative influence (reason-countering type)’, is defined as ‘influence that operates by countering a person’s reasoning capacities, with examples including social norms/ pressures, inducing affective states, playing on desires’.29 A single act of influence can fall into multiple categories, but a personalized approach designed to prompt empathic responses could be classified as a reason-countering type of non-argumentative influence. Relationships between reasons, emotion and autonomy are widely debated within philosophy, but it has been suggested that non-argumentative
4 | SOCIAL MEDIA The last decade has seen the rapid increase in popularity of social media. Sites such as Facebook, Twitter, and YouTube have provided platforms for individuals to share their lives with friends and strangers alike. The facility to share all facets of one’s life has created opportunities for individuals to draw attention to negative as well as positive life events and experiences. Social media campaigns have proved to be an effective way of generating support for causes, by both individuals and organizations. Crowd-funding, for example, is used extensively by patients in the United States to raise funds to pay for expensive medical treatment not covered by insurance.34 Social media has become very effective at generating groundswell of support, and terms such as
Crouch, R. A., & Elliott, C. (1999). Moral agency and the family: The case of living related organ transplantation. Cambridge Quarterly of Healthcare Ethics, 8(3), 275–287.
We thank an anonymous reviewer for this helpful point.
Black, I., & Forsberg, L. (2014). Would it be ethical to use motivational interviewing to increase family consent to deceased solid organ donation? Journal of Medical Ethics, 40, 63–38.
Blumenthal-Barby, J. (2012). Between reason and coercion: Ethically permissible influence in health care and health policy contexts. Kennedy Institute of Ethics Journal, 22(4), 345–366.
‘going viral’ illustrate how quickly support can build. Given this, it is 30
Dworkin, G. (1988). The theory and practice of autonomy. Cambridge: Cambridge University Press. Noggle, R. (1996). Manipulative actions: A conceptual and moral analysis. American Philosophical Quarterly, 33(1), 43–55.
Faden, R. R., Beauchamp, T. L., & King, N. M. (1986). A history and theory of informed consent. Oxford: Oxford University Press. 32 Tappolet, C. (2006). Autonomy and the emotions. European Journal of Analytic Philosophy, 2(2), 45–59. 33
Noggle, op. cit. note 30.
Sisler, J. (2012). Crowdfunding for medical expenses. Canadian Medical Association Journal, 184(2), E123–E124.
unsurprising that transplant authorities and individual patients make
providing potentially misleading information: If someone chooses to be
use of social media in an attempt to generate more organ donations.
a donor on the understanding that their donation is going to help some-
Various Facebook pages have been dedicated to campaigns in
one similar to the patients featured in the marketing materials, they may
transplantation. Facebook has the facility for registered donors to share
be concerned to learn that their donation has been allocated to some-
one who they would not be so keen to help. However, understood as a
recently, organ donation has been promoted using the dating app, Tin-
mechanism for evoking general empathy for the plight of those in need
der.36 Organizations, as well as individuals, have seized the opportunity
of organs, it seems less deceptive, since most people waiting for trans-
offered by the immense audience.37 Their efforts have largely focussed
plants will be experiencing relatively similar plights. But then as a per-
on promoting deceased donation, but social media can be used in
sonalized approach taking advantage of the identifiable victim effect,
many ways to promote living organ donation; some of which raise
this approach falls someway short. Although the patients featured in
awareness, and others use more personalized approaches.
marketing materials are identifiable and may invoke a sense of empathy,
their organ donor status with their friends via their profile.
Against this background, we will now explore three ways in which social media could be used to the advantage of the identifiable victim
donors are still being asked to help non-identified victims, so it seems likely that some of the identifiable victim effect may be lost.
effect by using personalized approaches in order to promote LKD. Our
Approach 2 Case study-based campaigns organized by
discussion is based on two key assumptions, introduced earlier: 1. That invoking empathy can lead to altruistic actions, such as donating a kidney. 2. That people are more likely to act altruistically towards an identifiable victim than a statistical victim.
individuals to promote directed altruistic donation. This approach is becoming popular on Facebook and dedicated websites such as matchingdonors.com.39 Pages and profiles can be set up (often by the patients themselves, but sometimes by their family or friends), which tell a patient’s story with the aim of prompting a donation specifically to that individual. Such pages often feature detailed
Approach 1 Institutionally organized case study-based
descriptions of the patient, their illness, and their life history, and the
campaign to promote non-directed altruistic donation.
more successful pages are presented in a way that tugs at the viewer’s heartstrings with the aim of eliciting empathy. Key aspects of their lives
The use of stories of identifiable patients who have been helped by
are brought to the fore in an apparent attempt to resonate with ‘brows-
(or who died needing) a donated organ are used to promote donation
ers’ with shared values or interests. For instance, many pages display
By outlining the experiences of people before and
photos of adult patients surrounded by their children and grandchildren,
after transplantation, the need for and benefits of organ donation are
with accompanying text highlighting how important they are to each
highlighted in a way that relates to a specific individual and encourages
other—something that people with close family members can relate to.
empathy. Although they provide an identifiable victim, the resulting
The success of this general approach is evidenced by a steady stream of
donations are not for the person in the adverts (as, in most cases, they
directed altruistic donors in the United States, where it has been permit-
have already received a transplant or died). Instead, the patient is fea-
ted for a long time. The approach is newer in Europe, but has resulted in
tured as an illustration of the good that transplantation can achieve, or
donations in the United Kingdom and the Netherlands. Several
in many countries.
the harm that it can prevent. The donated organs are allocated according to the national allocation models, balancing criteria such as urgency, benefit, and waiting time.
European countries, including France, Germany, and Greece, prohibit non-directed altruistic donation, and these same countries do not currently permit directed altruistic donation either.40 This form of directed living donation (also known as publically soli-
This approach to promoting organ donation raises relatively few ethical issues in its current form, and the same would be true if this was transferred over to social media. Nonetheless, transplantation is ‘marketed’ with a particularly positive spin. The types of people featured in these case studies are ethnically diverse, presented as having positive attributes (active, hardworking good parents) and illnesses unrelated to lifestyle. Understood as objective awareness, raising this could be
cited donation [PSD]) has raised concerns. The (largely) European network Ethical, Legal, and Psychological Aspects of Transplantation’s (ELPAT) position paper highlights potential for unfair allocation, damaged public perceptions, and links to the organ trade.41 Similar concerns have been raised by others,42 but such solicitation is legal in the 39
regarded as deceptive, as it attempts to influence behaviour by
MatchingDonors. (2016). MatchingDonors home page. Retrieved from http://matchingdonors.com/life/index.cfm
40 Lopp, L. (2013). Regulations regarding living organ donation in Europe. Berlin: Springer.
Facebook. (2016). Share your organ donor status. Retrieved from https:// www.facebook.com/help/416967021677693/
BBC News. (2015). NHS hooks up with dating app Tinder on organ donations. Retrieved from http://www.bbc.co.uk/news/technology-35070858
Frunza, M., Van Assche, K., Lennerling, A., Sterckx, S., Citterio, F., Mamode, N., . . . Dor, F. J. (2015). Dealing with public solicitation of organs from living donors—An elpat view. Transplantation, 99(10), 2210–2214.
Transplant Australia. (2016). Transplant Australia Facebook page. Retrieved from https://www.facebook.com/transplantaustralia/
NHS Blood and Transplant. (2016). People who are waiting for a transplant. Retrieved from https://www.organdonation.nhs.uk/real-life-stories/peoplewho-are-waiting-for-a-transplant/
Neidich, E., Neidich, A., Cooper, J., & Bramstedt, K. A. (2012). The ethical complexities of online organ solicitation via donor–patient websites: Avoiding the “beauty contest”. American Journal of Transplantation, 12(1), 43–47, Moorlock, G. (2015). Directed altruistic living donation: What is wrong with the beauty contest? Journal of Medical Ethics, 41(11), 875–879.
United Kingdom (provided there is no payment involved), and the UK’s
by luck alone, appeal to donors or who are able to market them-
Human Tissue Authority has recently included guidance on their own
selves most effectively.
website for potential donors and recipients thinking of using social media and dedicated websites.43 The potential negative dimensions of this form of donation have to be balanced against potential benefits to recipients of increasing the numbers of successful transplants, which could be significant if this approach was promoted more widely. For patients in need of a transplant, PSD is an opportunity to actively improve their own situation, something they are arguably entitled to do, given the costs and burdens of not gaining an organ.44 Those who do not have a suitable living-related donor are likely to spend a long time on waiting lists, and in many cases also on dialysis. Actively marketing and campaigning for oneself as a desirable target for potential donors provides two potential benefits: one may obtain
In response to claim 1, much has been written on directed donation within the context of deceased donation,46 and many of these arguments can also be applied to living donation. One can grant that it is generally preferable for organs to be allocated according to criteria designed to promote fair access, but this does not in itself provide a reason to prevent donations that can only be allocated according to other criteria. Faced with the choice of allocating a kidney according to potentially arbitrary criteria, or not having the kidney available for transplantation at all, it is arguably wasteful to take the latter option.47 Living-related donation is also widely accepted, so directed donation is not considered objectionable per se. In response to claim 2, it is not yet clear what the impact of PSD will
the benefits of a transplant, and one also regains some sense of control over one’s own destiny. This latter benefit may accrue regardless of the outcome. Alternatively, however, it could result in a heightened sense of abandonment, especially on dedicated sites where other ‘advertisers’ attract donors but one’s own efforts are unsuccessful. This is, after all, a space where people are actively and openly competing for a scarce resource and where efforts to help oneself (and not others) are rewarded. PSD creates something of a ‘beauty contest’,45 where patients put themselves in the shop window and potential donors are not just free to choose whether to donate or not, but also able to browse and choose a recipient on whatever grounds they like. This may further the preferences of some donors, but also brings concerns about justice into play. Although everyone waiting for a kidney may be
be in countries which have centralized allocation systems. Given existing evidence about the public’s preferences for organ allocation, where factors such as social value, moral deservingness, and past behaviours have been found to feature,48 it is reasonable to assume that encouraging a ‘free market’ in charitable giving on social media has the potential to result in significant inequalities of the kind that central allocations systems are designed to prevent. Promoting and encouraging PSD would therefore represent a risky strategy. Its potential to evoke empathy may result in more living donations, but there is a significant risk that this will come at a cost to the fairness of the allocation system, which, in turn, may undermine trust in the transplantation system. It is perhaps telling that countries that do permit PSD appear to tolerate rather than promote it.
free to advertise, some patients are better placed and able to promote
Approach 3 Institutionally organized case study-based
themselves more effectively than others. This poses a greater ethical
campaigns to promote directed altruistic donation.
challenge in some health systems than in others. For instance, in welfare systems where transplant services and the allocation of organs are run by the state, PSD may detract from the number of kidneys available to the general allocation pool. PSD disrupts the usual criteria that balance clinical need, benefit, and waiting time. Instead kidneys may be ‘allocated’ according to distinctly non-medical factors, such as religion, social value, and how photogenic the patients are. There are related
We have thus far explored two ways in which social media can be used to elicit empathy and take advantage of the identifiable victim effect to promote kidney donation. We will now consider a third approach that is perhaps controversial but offers clear advantages over the other two approaches. As far as we are aware, this approach is not currently used in any country.
issues stemming from unequal access to social media, varying social media savviness, and ability or otherwise to fund impressive and engaging campaigns. Two claims against this form of LKD can be posited, then:
Moorlock, G., Ives, J., Bramhall, S., & Draper, H. (2015). Should we reject donated organs on moral grounds or permit allocation using non-medical criteria?: A qualitative study. Bioethics; Wilkinson. op. cit. note 18. 47
Moorlock et al., op. cit. note 46.
1. It is wrong for people to choose recipients on the basis of nonmedical, or otherwise irrelevant criteria. 2. Allocation according to donors’ personal criteria will result in an unjust allocation of organs, skewed in favour of those who, often
Human Tissue Authority. (2017). Matching websites and social media. Retrieved from https://www.hta.gov.uk/guidance-public/living-organ-donation/matching-websites-and-social-media
Coupled with the fact that they may be attracting completely new donors who are only prepared to donate to them, so nobody else is deprived of a transplant that they might otherwise have got.
Boulware, L., Troll, M., Wang, N. Y., & Powe, N. (2007). Perceived transparency and fairness of the organ allocation system and willingness to donate organs: A national study. American Journal of Transplantation, 7(7), 1778–1787, Sander, S. L., & Miller, B. K. (2005). Public knowledge and attitudes regarding organ and tissue donation: An analysis of the northwest ohio community. Patient Education and Counseling, 58(2), 154–163, Tong, A., Howard, K., Jan, S., Cass, A., Rose, J., Chadban, S., . . . Craig, J. C. (2010). Community preferences for the allocation of solid organs for transplantation: A systematic review. Transplantation, 89(7), 796–805, Clark, M. D., Leech, D., Gumber, A., Moro, D., Szczepura, A., West, N., & Higgins, R. (2012). Who should be prioritized for renal transplantation?: Analysis of key stakeholder preferences using discrete choice experiments. BMC Nephrology, 13(1), 1, Geddes, C. C., Rodger, R. S. C., Smith, C., & Ganai, A. (2005). Allocation of deceased donor kidneys for transplantation: Opinions of patients with ckd. American Journal of Kidney Diseases, 46(5), 949–956.
We have argued that although PSD could result in additional
promote only the stories of patients who stand a good chance of find-
donors, promoting it via Approach 2 would involve a significant risk.
ing a match, thereby swiftly removing them from the waiting list.
Approach 2 empowers donors and recipients, but in doing so it relin-
Nevertheless, there would remain a chance that the system we pro-
quishes control over important aspects of organ donation and alloca-
pose might motivate many people to come forward as potential donors
tion. Alternatively, transplant authorities could harness social media to
only to find that they are not compatible with their preferred recipient.
make direct appeals on behalf, and with the consent, of specific wait-
These people may be lost to the donation system if they cannot help
listed individuals selected according to similar principles used to allo-
their chosen recipient (and this would be an argument against this
cate organs in their jurisdiction, and bringing to bear for each selected
approach if these were donors who, without PSD, may have been will-
individual all of their sophisticated marketing resources. In doing so,
ing to donate to a non-specified recipient). This would be undesirable
the benefits of social media are obtained without relinquishing control
given that they have already shown willingness to debate and used
over the aspects of donation and allocation that would make promoting
resources involved in tissue-typing. One solution to this would be to
Approach 2 such a risk.
develop a database, akin to that operated by Anthony Nolan in the
For instance, transplant authorities could promote only the stories
United Kingdom,51 where potential donor details and tissue-typing
of urgent patients at the top of waiting lists, thereby increasing their
results are stored. With appropriate consent, potential donors could
likelihood of receiving a transplant before they die or become too ill to
remain on this database and be notified when stories of patients with
benefit from a transplant. Alternatively, they could promote those who
whom they are a match are promoted. The potential donor would then
have waited, or are predicted to be waiting, a long time for a transplant,
be free to choose whether they wanted to donate a kidney to this
such as patients of Black or Asian ethnic origin.49 A further option
patient. Detailed consideration of a living donor register is beyond the
could be to promote the cases of those involved in altruistic chains of
scope of this article, so we raise it merely as one possible means of
donation. Altruistic chains occur when Donor A is willing to donate to
keeping initially incompatible donors engaged with the possibility of
Recipient A, but is instead only a match for Recipient B, who also has a
donating in the future.
willing donor, Donor B, who is only a match for Recipient C. Finding
By taking back control over advertising for LKD, transplant author-
Donor X online, who is a match for Recipient A, can start a chain of
ities would also be able to have greater control over the content of
donations (Donor X to Recipient A, Donor A to Recipient B, Donor B
advertisements for donors. Whereas there have been concerns about
to Recipient C, and so on), which means that several otherwise incom-
the beauty contest created by PSD, an institutionally organized system
patible donor/recipient pairs are able to receive and donate. These
of LKD could ensure that only certain factors featured in the descrip-
chains often require a single donation to be ‘fed’ into the chain to cre-
tions of patients. Careful consideration would have to be given to pre-
ate a domino effect so that multiple patients receive transplants. The
cisely what things should be included in descriptions of patients, as it
decision on precisely what to prioritize is not central to our argument.
will be necessary to balance privacy (by excluding extraneous personal
The salient point is that effort could be directed impartially and fairly
factors) with the effectiveness with which the promotion of the individ-
by harnessing the power of empathy evoked online to motivate dona-
ual engages with the public and evokes empathy. Additionally, by con-
tion. Although potential donors may feel empathy towards only certain
trolling the content of appeals, the authorities would be ensuring that
individuals and choose recipients according to criteria that are poten-
the content is accurate and not misleading to potential donors. This, in
tially morally irrelevant, by ensuring that potential donors are exposed
turn, would limit the potential for exploitation on both sides, and help to
to patients who meet the morally relevant criteria, the justice of the
maintain public trust in the system. There is a possibility, however, that
allocation system need not be compromised.
institutionally organized campaigns could lose the ‘individuality’ that
This approach also allows financial resources to be used more
appeals to some donors, or that too much ‘official’ institutional input
effectively. A significant problem with PSD is that it is sometimes used
may deter some donors who want to donate outside of conventional
to ‘find the needle in the haystack’ by patients who, for various medical
systems, so these considerations would have to be balanced carefully.
reasons (such as rare blood type, or Human leukocyte antigen [HLA]
A further advantage of this approach is that it would be easier to
sensitization),50 are particularly unlikely to find a suitable matching
monitor communication between potential donors and recipients.
donor. A single patient may attract tens of potential donors, each of
There have been concerns that the use of social media can be manipu-
which would have to be tested for compatibility, even though the likeli-
lated to permit trade in organs, which is prohibited under the Declara-
hood would be that none of them was a suitable match. The resource
tion of Istanbul.52 We have also suggested that they leave scope for
implications are significant, so transplant authorities could choose to
deception—as no one vets the veracity of the information provided by recipients. At present, donors and recipients identified through social
This is a particular problem in the United Kingdom, but similar issues occur in other countries with a history of immigration: Randhawa, G. (2012). Renal health and transplantation: A focus on ethnicity. Journal of Renal Care, 38(s1), 109–114.
Sanfilippo, F. P., Vaughn, W. K., Peters, T. G., Shield, C. F., Adams, P. L., Lorber, M. I., & Williams, G. M. (1992). Factors affecting the waiting time of cadaveric kidney transplant candidates in the united states. JAMA, 267(2), 247–252.
media are able to contact each other through channels of their choice, and it is extremely difficult to monitor and police this communication. 51 Anthony Nolan. (2016). Anthony Nolan home page. Retrieved from https://www.anthonynolan.org/ 52
Declaration of Istanbul. (2016). Declaration of Istanbul home page. Retrieved from http://www.declarationofistanbul.org/
Although websites such as matchingdonors.com report to relevant
already choose who receives transplants (in living-related donation, and
authorities any discussions that mention payment, there is nothing to
PSD), and therefore to some extent, are already choosing who lives and
stop users of the site exchanging other contact details and starting con-
who dies. It may be that state involvement in active competition is con-
versations about payment away from the main website. While it is
sidered objectionable, but the state is already involved as it ultimately
impossible to completely safeguard against payment, an institutionally
facilitates and reaps the benefits of the donations and transplants that
organized system could limit the sharing of contact details, and encour-
currently arise from it. Moreover, our proposed system could side-step
age communication solely through its own channels.
some of the less appealing aspects of direct competition. For instance, promoting only a single patient at a time (for a limited period of time,
5 | OBJECTIONS
say a week) would mean that potential donors would not be choosing between several competing identifiable recipients. If it was still deemed
We can foresee several objections to Approach 3. First, by engaging
advantageous to promote several patients at the same time, careful
empathy to promote LKD, transplant authorities are arguably encour-
selection could ensure that direct competition was minimized, for
aging donation motivated by potentially irrelevant or morally suspect
instance, by ensuring patients had different tissue-types.
criteria such as the recipients’ race, religious beliefs, or social status.
A further issue is how Approach 3 could operate in conjunction
Motivation behind donation has been discussed at length in relation to
with Approach 2. It would be possible (albeit difficult) to only permit
directed deceased donation, and it has been repeatedly argued that too
Approach 3 and prohibit individuals from launching their own ‘inde-
much emphasis is placed on impartial altruism as being the sole accept-
pendent’ campaigns. This would, however, limit the scope for patients
able motivator, and that, in any case, it is very difficult to be certain of
to help themselves out of their own dire situations, and although this
Moreover, one undesirable effect of suspect
could perhaps be justified, it may be viewed as a backward step in
motivation—the disruption of fair allocation—is mitigated by the use of
countries that already permit Approach 2. It may also prove practically
fair criteria to decide which cases are promoted. Thus, organs go where
difficult to monitor and prevent such campaigns, given the large and
they ‘should’ even if those giving them are indifferent, or even hostile,
often uncontrollable nature of the internet. It would be possible to
to impartial allocation.
refuse to proceed with transplants arising from donors and recipients
Second, there is still a risk that some sorts of people will benefit
matched via Approach 2,57 but turning away willing donors could be
more than others. As with PSD described in Approach 2, some patients
considered a waste of potential benefit. Another option would be to
may be less likely to attract willing living donors than others. There
make patients’ access to Approach 3 conditional on them not attempt-
may, however, be significant direct benefit for all patients. Although a
ing to solicit donors through independent channels.58 If Approach 3
specific campaign might not prove fruitful for those who are less ‘beau-
could be demonstrated to be an effective way of recipients finding
tiful’ in the sense implied by Neidich et al. and Moorlock, if Approach 3
donors, such a condition may result in Approach 2 becoming less popu-
results in additional donations overall, it will remove patients from wait-
lar. Some people may still choose independent channels over Approach
ing lists. Having fewer patients on waiting lists improves the situation
3, but if the institutionally organized campaign system was marketed as
for everyone remaining on the waiting list. Those featured in the cam-
the ideal and ‘official’ portal for finding potential organ recipients,
paigns would still have access to organs’ normal channels. Therefore,
Approach 2 may also become less appealing to potential donors. Again,
although Approach 3 may not benefit everybody equally, it may pro-
we need not endorse a particular position here, other than to show
vide some benefit to everyone.54 It supports a more just allocation sys-
that there are different possibilities. Determining which option is pref-
tem than PSD under Approach 2, which is already permitted.
erable requires empirical evidence, which is currently lacking.
Third, one might think it distasteful to have patients openly and literally competing with one another for resources. A Dutch television
6 | CONCLUSIONS
programme caused controversy in 2007 when it showcased several potential organ recipients and allowed viewers to vote on which patient
We have discussed three approaches to using social media to promote
they felt should receive a transplant.55 The programme transpired to be
organ donation. Approach 1 raises the fewest ethical issues, but is likely
a hoax, produced with the intention of raising awareness of the organ
to be least effective. Approach 2 is ethically problematic in some
shortage, but it highlights the potential for negative public reactions. The reality, however, is that potential recipients are already competing with each other, whether actively or passively.56 Likewise, donors 53
This approach may therefore provide a form of Pareto benefit. See, for examples: Cohen, G. A. (1995). The pareto argument for inequality. Social Philosophy and Policy, 12(1), 160–185. Rawls, J. (1971). A theory of justice. Cambridge, MA: Harvard University Press. Saunders, op. cit. note 18.
respects, but is currently permitted in some countries. Despite it being permitted, it is generally not actively promoted, possibly due to the underlying ethical concerns, and the risks involved in leaving important aspects of donation/allocation in the hands of individuals rather than impartial organizations. Approach 3 is novel, and admittedly controversial. It does, however, offer clear advantages over Approach 2 in terms
BBC News. (2007). Outcry over TV kidney competition. Retrieved from http://news.bbc.co.uk/1/hi/entertainment/6699847.stm
57 Anecdotally we have heard of donors and recipients matched through certain dedicated websites being prevented from going ahead with donation.
Moorlock, op. cit. note 42.
We again thank an anonymous reviewer for this suggestion.
of preserving a relatively just allocation system and keeping various
aspects of the process under the control of transplant authorities. Fur-
ther research exploring responses to social media organ donation cam-
paigns, as well as motivations behind PSD, more generally would be extremely helpful for establishing how our suggested approach could be best used. We accept that establishing such a system could be resource-intensive, and that ongoing costs may also be high, but these costs should be considered against the ongoing cost of maintaining
AUT HOR B IOGRAP HIE S GREG MOORLOCK is a senior teaching fellow at Warwick Medical School, University of Warwick. His research focuses primarily on transplant ethics.
patients waiting for transplants. The precise implementation of
HEATHER DRAPER is professor of Bioethics, Warwick Medical School, Uni-
Approach 3 would need careful consideration, but the important factor
versity of Warwick. She has a range of research interests, including the
is that these details remain under the control of transplant authorities.
implementation of new technologies in healthcare and transplant
Approach 3 appeals to empathy to do the motivating, but does so in a
ethics. This article lies at the intersection of these two interests.
way that minimizes disruption to desirable allocation policies. Approach 3, if implemented correctly, could increase rates of LKD without significantly undermining the justice of kidney allocation.
How to cite this article: Moorlock G, Draper H. Empathy, social media, and directed altruistic living organ donation. Bioethics.
CONFLIC T OF I NTE R ES T The authors declare no conflict of interest.