Given growing concerns about medical crowdfunding, has the time come to instate gatekeepers to monitor the area?
The subjects of Thomas Grey’s Elegy Written in a Country Churchyard are “Far from the madding crowd’s ignoble strife”; journalist Douglas Murray has written of The Madness of Crowds (2019); and in a speech given at the University of Copenhagen in 1968 the author Arthur Koestler spoke of a depersonalised “kind of savagery generated by the groupmind, which is largely indifferent, or even opposed, to the interests of the individuals who constitute the group”. Given these far-from-ringing endorsements of crowds, it is almost a relief to find Brian Appleyard, in his The Brain is Wider than the Sky (2011), citing writer James Surowiecki’s idea – articulated in The Wisdom of Crowds (2004) – that en masse we are not only cleverer than experts but “more decent than individuals or small groups”.
Really? Has the internet changed the nature of crowds? Previously passive members of an audience are now participants and this passive/active shift has extended the word “community” to include screen-mediated encounters with individuals we will never meet. For example, “GoFundMe announces its community has made more than 120 million donations, raising over $9 billion for people and causes” is a 2019 headline on the company’s website. And in relation to medical crowdfunding – using websites and social media to attract money from donors to pay for medical care – GoFundMe is not only “the leader in online medical fundraising”, but also raises more than £450 million annually.
As a salesman might ask his favourite audience – a herd of independent minds – “what’s not to like?” Well, while walking on eggshells, but not treading on toes, I suggest that not all cyber “communities” are braced for collision with ethical boundaries towards which their well-intentioned efforts may impel them. For example, writing in the JAMA (2018, 320: 1705–1706) Vox et al describe how, between November 2015 and December 2017, they identified campaigns posted in the United States and Canada on GoFundMe for the following treatments that are unsupported by evidence or are potentially unsafe: Homeopathy or naturopathy for cancer; hyperbaric oxygen therapy for brain injury; stem cell therapy for brain injury and spinal cord injury; and long-term antibiotic therapy for “chronic Lyme disease”.
Over 1,000 medical crowdfunding campaigns for these treatments raised more than $6.7 million and the authors conclude “that a wide scope of campaigns for unsupported, ineffective, or potentially dangerous treatments are moderately successful in obtaining funding”.
More recently, Iqbal and Collins, writing in the Irish Journal of Medical Science (2021, 190: 1355–1361), considered ‘Crowdfunding for anticancer therapies: An analysis of non-US GoFundMe pages’. Of 150 pages identified between November 2019 and January 2020, most requestors had brain cancer, followed by breast cancer and ovarian cancer. The median amount of money requested was €48,205 (€1,171–€588,759) and the authors commented that “worryingly, a large proportion are requesting immunotherapy for unlicensed indications and alternative therapies with no evidence”.
But in an age where patient autonomy is asserted, and crowdfunding is widespread why should the hope of a patient and their family be stifled by the ethical reservations of others who suggest that such hopes may be beyond realistic reach? This false hope harms argument is addressed by ethicist Dr Marleen Eijkholt, who acknowledges in
Bioethics (2020, 34:703–711) the importance of hope for patients’ self-identity as active agents but insists “that the healthcare profession has an obligation to avoid collaborating or participating in, propagating or augmenting false hope in medicine”. By complying with unrealistic patient and family requests, including those “for rights to try resuscitative efforts in terminally ill patients, or other demands for non-beneficial treatments” harm can be done “on both individual and communal levels and cannot be ignored”.
Iqbal and Collins (2021) highlight concerns around queue jumping and the promotion of medical tourism;
note possibilities for fraud and dishonesty; and suggest that “[p]ossible expert review panels containing doctors, nurses and other healthcare professionals could screen the content of new webpages for authenticity, appropriateness, and safety”.
Charlie Gard was an infant born with encephalomyopathic mitochondrial DNA depletion syndrome, and although crowdfunding was used to finance experimental nucleoside therapy, the treatment was ultimately not given. This case is considered in ‘Bioethics and the use of social media for medical crowdfunding’ by Kubheka in BMC Medical Ethics (2020, 21:96), noting both the role of the media in highlighting interventions by Donald Trump and Pope Francis, and that “GoFundMe donated $10,000 to Charlie’s campaign hosted on their platform, but had refused to waive platform fees on a campaign supporting victims of a Somali drought in 2017, raising ethical disquiet”.
Here, it seems, is a for-profit company assuming a gatekeeper role and determining who gains access to care. Should there be medical gatekeepers for medical crowdfunding, and, if so, might they make moral decisions that are derived from emotion, or even display moral blindness and call it tolerance? Possibly. However, those tempted to accuse gatekeepers of elitism by imposing on the public what they think is good for it, should remind themselves that gatekeepers are also the public… but are prepared to carry a can that others choose not to pick up.
The Judge's report proposes that a Tribunal be established under legislation to hear and determine claims...
In December, the HSE released part of an external review into the case of 'Brandon', a...
The evidence on doctor burnout “should scare us and concern us”, the Director of the RCSI...
A review of public health governance structures and addressing “longstanding” IT infrastructure...