Organ and tissue donation
An ethical analysis of online sharing to prompt tissue donation.
Our research identifies and explores issues that arise from establishing an on-line relationship of sufficient trust and empathy to result in an ‘altruistic’ living kidney donation.
It will suggests and discusses the principles that should govern this practice. It relates these to other possible avenues for on-line sharing, including the forming of on-line relationships for the purpose of tissue donation in other contexts.
Background
Organs may be donated by living as well as deceased donors. Most living donors are family members of the recipient, or friends of longstanding. Occasionally people donate to strangers.
Typically such donors donate into the general donor pool. The gifted organs – usually only kidneys – are allocated according to the same principles as deceased donation. It is rare for the donor and recipient to learn the identity of the other.
Clinicians increasingly have been asked to perform transplants from donors whom recipients have met on-line, on sites set up – sometimes on a commercial basis – for the purpose of matching willing donors to those in need of a transplant.
Trade in organs is illegal in the UK. Here regulations permit transplants to proceed only where the two parties have met on a strictly not-for-profit site. Nonetheless, such ‘on-line pairings’ challenge the understanding of altruism traditionally used in transplantation.
Such arrangements disrupt existing allocations models, which are supposed to ensure that organs are distributed effectively and fairly. But then so too do other forms of living donation – like that which takes place between family members.
So perhaps the pertinent issue is whether they extend what it means to be ‘in a relationship’ in ways that are unsettling given the risks associated with live donation.
Programme of work
Our programme of work included, but will not be limited to, the ways in which this kind of on-line sharing:
- Improves our understanding of the relationship between trust and sharing on-line, and the ethics of on-line sharing. For instance, where do we draw the line between reasonable expectations about what needs to be shared to motivate donors to give to specific individuals and gratuitous or exploitative demands for over-sharing? Is mutual trust sufficient to protect both sides?
- Impacts on existing allocation models. Do opportunities for on-line sharing dangerously undermine impartial but ‘top down’ forms of allocation, or do they represent a ‘bottom up’ response to scarcity that empowers potential donors and recipients and engenders resilience. Would officially sanctioned and maintained on-line sharing sites work for or against individual resilience?
- May erode trust and supportive on- and off-line sharing relationships between individuals waiting for transplantation. Using empathy on-line to attract potential donors introduces direct competition between potential recipients. This may result in distrust and the formations of an ‘underclass’ of potential recipients. It may disadvantage:
- stigmatised groups;
- those who do not have the resources (widely conceived e.g. not limited to access to on-line facilities but for instance dependent children or other characteristics that may attract a potential donor);
- anyone who is unwilling to share private information.
To what extent should considerations such as these affect our attitudes to and public policy about donation pairing on-line? How can emotion be understood as a form of currency to be fairly allocated?
- Can be extended to other forms of tissue donation and other forms sharing being explored by our partners.
Key findings
Online spaces have the potential both to disrupt the current system in ways that may be undesirable and seem to empower potential recipients, and their supporters, to take positive action towards finding their own donor.
- We first explored (Moorlock 2015) whether directed living kidney donation - of the kind that arises as a result of social media campaigns – is incompatible with altruism as traditionally understood in transplantation.
Online spaces permit potential donors to ‘window shop’ for potential recipients setting up a ‘beauty contest’ that advantages some potential recipients, who might not necessarily be in greatest need.
We found that, whilst not incompatible with altruism on the part of donors, encouraging recipients to compete against each, may have the effect of undermining the collective, communal and impartial ethos of the donation system (and the national allocation system).
- We then explored whether a system could be devised that took account of the potential ethical risks and benefits and was in harmony with the current ethos of gifting and impartial allocation, by harnessing trust and empathy (Moorlock & Draper 2018).
We suggest that those working in transplantation must embrace the use of online spaces because it seems unreasonable to take measures to prevent NHS patients (and their supporters) from using social media to improve their situations by attracting a living donor (providing no trade occurs).
Furthermore, online spaces have the potential to make individual recipients more ‘known’ to potential donors thereby promoting greater empathy, which in its turn may encourage donation (including deceased donation).
We argue that better use of online spaces by those working with and on the behalf of patients with renal failure may enable them to mitigate the disruptive effect on the current allocation system, thereby maintaining trust.
This would also even out some of the negative effects of the beauty contest and reassert greatest need as the primary principle in allocation.
By embracing online spaces and working with potential recipients and donors, possible risks, including of commercialisation, may be minimised using moderation.
The ethical risks and benefits of sharing online the need for tissue, and willingness to meet this need, should be taken into account by those using these spaces.
- As part of our cross-cutting work, we drafted a paper considering the ethical issue of moderation of online spaces.
In this paper we explore the tensions that arise between the need to provide spaces where people can express themselves freely and share different kinds of knowledge and experience, and the need to ensure that this sharing is done safely, in an appropriate space.
We argue that moderators, and the moderation policies that they enforce, shape online sharing, and shape the spaces that sharing occurs in.
This consequently gives moderators some control over the risks/benefits for users of moderated online spaces but, given the often invisible nature of many users of these spaces, striking an appropriate balance is likely to be extremely challenging.
Although moderators may make the final decisions regarding moderation, we argue that the responsibility for harm, or failure to maximise benefit, arising from moderation should not lie solely with moderators.
Instead, we suggest, that those who contribute to the moderation policies, and those who shape spaces under them (including ‘ordinary’ users of these spaces) share responsibility.
Publications
Moorlock, G. (2015). Directed altruistic living donation: what is wrong with the beauty contest? Journal of Medical Ethics, 41(11), 875–879.
Moorlock, G., & Draper, H. (2018). Empathy, social media, and directed altruistic living organ donation. Bioethics, 32(5), 289–297.
Conference presentations
Moorlock, G. and Draper, H., Trust, empathy and the ethics of advertising online for living donors. British Transplantation Society Congress, Bournemouth, March 2015.
Moorlock, G. and Draper, H., No harm in asking? Ethical, Legal and Psychosocial Aspects of Transplantation (ELPAT) Congress, Rome, April 2016.
Moorlock, G., What’s wrong with the beauty contest? Invited speaker, Ethical, Legal and Psychosocial Aspects of Transplantation (ELPAT) Congress. Rome 2016.
Moorlock, G. and Draper, H., Trust and Risk in Publicly Solicited Living Organ Donation (Poster), British Transplantation Society Congress, Harrogate, 2017.
Moorlock, G., Beauty Contests and Directed Altruistic Donation, invited speaker, Boundaries, Bodies, Borders: The Global Exchange of Human Body Parts, Leeds, May 2017.
Contacts
Professor Heather Draper
University of Warwick
+44 (0)2476 150347
H.Draper@warwick.ac.uk
Co Investigator / Lead investigator for research area: Organ and tissue donation
Dr Greg Moorlock
Research Associate