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Ethical issues in crowdfunding for medical treatment

Kathryn Millard is a retired consultant In public health. This paper is based on a dissertation written in 2022 for the Diploma in the Philosophy of Medicine of the Worshipful Society of Apothecaries and selected for the 2022 Sydney Selwyn Lecture.

Online crowdfunding has become an increasingly popular way of seeking donations for various personal causes, including medical care. In countries without universal healthcare coverage, people who are uninsured or underinsured may use crowdfunding to access essential medical treatment, which might otherwise be unaffordable for them, at least without falling into debt. However, even in countries with comprehensive state or insurance-based healthcare provision, people still undertake crowdfunding for medical treatment outside the standard provision. In the UK, crowdfunding may be used to access a range of treatments that are limited or excluded from NHS funding, including treatment abroad (often for experimental or novel treatments), ‘alternative’ or complementary therapies, specialist equipment, fertility treatments, cosmetic surgery, and other treatments in the private sector that are either unavailable or subject to long waiting times in the NHS.1,2 In many cases, funding is also sought to cover some indirect costs of ill health – such as lost wages or travel and accommodation for hospital visits – but this article will focus on crowdfunding for the direct costs of medical care.

In the UK, crowdfunding may be used to access a range of treatments that are limited or excluded from NHS funding, including treatment abroad…

Crowdfunding raises some ethical issues which may legitimately concern health professionals. Much of the published research has been carried out in the United States, with very little specific to the UK. However, the basic ethical issues that arise are likely to be similar in nature. These include considerations about autonomy and privacy, and concerns about the accountability and governance of campaigns. There may be additional reservations relating to the nature of the treatment for which funding is being sought, particularly if it is of an unproven, experimental or alternative nature. Finally, there may be broader concerns about fairness and justice.

People who embark on crowdfunding will hope to achieve a funding target, which will enable them to have a particular course of treatment. However, disappointment may be a common occurrence. Although there have been some well-publicised cases where large sums of money have been raised, the reality seems to be that most campaigns fail to reach their funding targets.3

Crowdfunding: Autonomy, privacy and fraud

At first sight, crowdfunding might be considered to support autonomy: if fundraising is successful, the beneficiary can choose to have treatment that might not otherwise have been available to them. However, the choices people make are dependent on the quality of information they have available about different treatment options, and how they interpret this.

Considerations of autonomy may be of particular concern if a crowdfunding campaign is set up on behalf of a child or other vulnerable person who does not have the capacity to consent. Moreover, even when beneficiaries have capacity, they may still be subject to external influences, particularly when the campaign is set up on their behalf by a family member or friend. And of course, once donations have started to come in, a beneficiary might find it quite difficult to change their mind about pursuing the treatment.

Privacy is a particular concern, as it may be necessary to divulge not only sensitive medical information, but also information about family and financial circumstances, to explain the reasons for fundraising. With this information in the public domain, some people may be vulnerable to abusive or unwanted contacts; and, once information is disclosed on the internet, it may be very difficult to delete effectively.

It is particularly worrying to see some campaigns, set up by third parties on a beneficiary’s behalf, which imply that the beneficiary is unaware of the campaign.

It is particularly worrying to see some campaigns, set up by third parties on a beneficiary’s behalf, which imply that the beneficiary is unaware of the campaign. To divulge personal information about the beneficiary without their consent is likely to be against crowdfunding platforms’ terms and conditions, but nevertheless, some examples can be found with statements such as “X doesn’t know about this page” or “X didn’t want me to do this”. Of course, it is possible that the beneficiary has consented, but did not want to appear to be asking for funding for themselves. However, if they are genuinely unaware of the campaign set up on their behalf, it raises serious concerns.

This links with more general concerns about the governance of crowdfunding campaigns, and the potential for fraud.  There have been reported instances of fraudulent campaigns – involving fictitious beneficiaries, fabricated illnesses, or misuse of funds – although these appear to be very rare occurrences.4 However, some transgressions may not be obvious: for example, embellishment of a story about someone’s clinical condition, or exaggeration about the chances of success of an expensive alternative treatment. Other concerns might be about how funds are used if they are either insufficient for the intended purpose, or in excess of the required amount.

There may be additional considerations relating to the nature of the treatment for which funding is being sought, especially if it has poor evidence of effectiveness, or a risk of harm. This includes indirect harm if an alternative therapy of lesser effectiveness is used in place of appropriate conventional treatment or palliative care. Particular concerns have been raised about crowdfunding for alternative or experimental treatments for cancer,5 as well as for unproven stem cell-based therapies.6,7 These treatments may be offered by clinics in any part of the world, and may be marketed through the internet directly to consumers.7 Of course, these concerns apply equally to people who are self-funding, but crowdfunding provides an expanded consumer market, potentially diverting well-intentioned donations to practitioners and clinics offering treatments of questionable benefit.

Crowdfunding and justice

Finally, there are broader concerns about justice and fairness. At population level, a key question is why people are needing to use crowdfunding at all, particularly when it is used to fund essential medical care in countries without population healthcare coverage. At an individual level, crowdfunding might be imagined as a way of ‘levelling up’, enabling people who are not wealthy to access medical treatments that would otherwise be beyond their means.  However, in reality, it appears that crowdfunding actually reinforces socioeconomic inequalities in access to healthcare, at least in the United States where most research has been carried out.Individuals who are well-resourced and educated are likely to have better skills for marketing their crowdfunding campaigns; and people with more connections, and wealthier family and friends, are likely to be able to raise more money.8,9  This aspect may be of lesser concern in countries with universal health coverage: some of the treatments that people may crowdfund for are not funded by the NHS for very good reasons (like having poor evidence of effectiveness), although some instances of crowdfunding may reflect concerns about issues such as long waiting times or delays in accessing effective new treatments.

Three situations that could concern doctors

As the use of crowdfunding continues to grow, doctors may increasingly come into contact with patients who are considering crowdfunding for medical treatment, and various ethical scenarios may arise.

…some of the treatments that people may crowdfund for are not funded by the NHS for very good reasons (like having poor evidence of effectiveness)…

One situation – which is not unique to crowdfunding, but may be facilitated by this form of fundraising – would be when a patient is seeking a treatment that is of an alternative or experimental nature, which their doctor does not feel is in their best interests. This may lead to a conflict between the doctor’s obligations to provide an adequate standard of care, which may include advising against the alternative treatment pathway, and their considerations of respect for patient autonomy. However, if the patient is a child and there is disagreement between parents and doctors about what is in the child’s best interests, this may occasionally lead to intervention by the courts.10

In a different scenario, if a doctor considered that an unfunded treatment would be beneficial for the patient, would it ever be appropriate to suggest crowdfunding to a patient, or to actively support a personal crowdfunding campaign? One example might be for funding a high-cost drug which had been shown to be effective, but was not yet approved for use and available on the NHS. However, as most crowdfunding campaigns fail to reach their funding targets, suggesting or encouraging crowdfunding might raise false hopes, as well as exposing the patient to privacy risks. Moreover, if a group of similar patients could benefit from the same treatment, supporting individual patients’ personal fundraising might be contrary to the principle of equitable access.

Another situation that may arise, given the public nature of crowdfunding campaigns, is if a doctor becomes aware of a campaign that gives misleading information about the condition of a patient known to them, or appears to be fraudulent, presenting a conflict between maintaining patient confidentiality and complicity in dishonest activity.

If the use of crowdfunding continues to grow, more doctors may be facing situations of this sort, although there appears to be a lack of ethical guidance on the specific issues posed or exacerbated by crowdfunding. For example, the only reference to crowdfunding on the GMC’s website appears in their guidance on cosmetic surgery which states “the guidance does not touch on how procedures are paid for because we would not expect doctors to have to make judgment calls about this issue”.11 Perhaps the organisations that support medical professionals should look at the specific ethical challenges of crowdfunding, and consider whether further guidance is needed.

Editor’s note: a lecture given by the author on this topic to the Society of Apothecaries is available here: https://www.youtube.com/watch?v=kfmLCf8Kczs&t=176s

References

1. Coutrot IP, Smith R, Cornelsen L. Is the rise of crowdfunding for medical expenses in the United Kingdom symptomatic of systemic gaps in health and social care? Journal of Health Services Research & Policy. 2020; 25(3): 181-186. doi:10.1177/1355819619897949.

2. Saleh SN, Ajufo E, Lehmann CU, Medford RJ. A Comparison of Online Medical Crowdfunding in Canada, the UK, and the US. JAMA Network Open. 2020; 3(10): e2021684. doi:10.1001/jamanetworkopen.2020.21684.

3. Kenworthy N, Igra M. Medical Crowdfunding and Disparities in Health Care Access in the United States, 2016-2020. American Journal of Public Health. 2022; 112(3): 491-498. doi:10.2105/AJPH.2021.306617

4. Zenone M, Snyder J. Fraud in Medical Crowdfunding: A Typology of Publicized Cases and Policy Recommendations. Policy & Internet. 11: 215-234. doi:10.1002/poi3.188

5. Newman M. Is cancer fundraising fuelling quackery? BMJ. 2018; 362:k3829. doi:10.1136/bmj.k3829

6. Snyder J, Turner L, Crooks VA. Crowdfunding for Unproven Stem Cell–Based Interventions (Research Letter). JAMA. 2018; 319(18): 1935–1936. doi:10.1001/jama.2018.3057

7. Lyons S, Salgaonkar S, Flaherty GT. International stem cell tourism: a critical literature review and evidence-based recommendations. International Health. 2022; 14(2): 132–141. doi:10.1093/inthealth/ihab050

8. Berliner LS, Kenworthy NJ. Producing a worthy illness: Personal crowdfunding amidst financial crisis. Social Science and Medicine. 2017; 187: 233–242. https://doi.org/10.1016/j.socscimed.2017.02.008.
(https://www.sciencedirect.com/science/article/pii/S0277953617300886)

9. Kenworthy N. Like a Grinding Stone: How Crowdfunding Platforms Create, Perpetuate, and Value Health Inequities. Med Anthropol Q. 2021; 35(3): 327-345. doi: 10.1111/maq.12639.

10. Nuffield Council on Bioethics. (2019) Bioethics Briefing Note – Disagreements in the care of critically ill children. 2019. Available from: https://www.nuffieldbioethics.org/assets/pdfs/Disagreements-in-the-care-of-critically-ill-children.pdf [Accessed 31-1-23]

11. General Medical Council. Questions about our cosmetic interventions guidance. (‘What advice do you give to doctors who are approached by patients using crowdfunding?’) [Online] Available from: https://www.gmc-uk.org/ethical-guidance/learning-materials/cosmetic-interventions—faqs [Accessed 31-1-23]

Featured image by Josh Appel on Unsplash

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