By Stacey Kusterbeck
Even if insurance covers some or most of the cost of an organ transplant, recipients (and to a lesser extent, donors) can face a significant financial burden. Financial expenses surrounding organ transplantation are motivating some recipients to raise money through medical crowdfunding. “There are several ethical issues to consider, including equity, accountability, and oversight, as well as policy and legal considerations,” says Leslie M. Whetstine, PhD, professor of philosophy at Walsh University in North Canton, OH, and a bioethicist at Aultman Hospital.
Equity concerns focus on whether crowdfunding gives an unfair advantage to those who already have resources to create such campaigns and who can tap deep reservoirs of family and friends to contribute. A recent study suggested that there are racial disparities in individuals’ ability to successfully raise requested funds, with Black and Hispanic fundraisers less likely to achieve monetary goals.1 “Medical crowdfunding also raises questions about the ‘moral worthiness’ of those seeking assistance. There are some data showing that the type of illness one has may influence the success of their campaign, with those with chronic illnesses faring worse,” notes Whetstine.2
Accountability is another concern, in terms of ensuring campaigns are legitimate and that monies are used as intended. There also is the question of how surplus funds are handled. “I do not have recommendations to guide transplant centers on policies to govern crowdfunding. Rather, I would suggest we work on the systemic barriers inherent in the system that make these efforts appealing,” says Whetstine.
As a senior resident, Carrie Thiessen, MD, PHD, heard about a case of a living organ donor with a crowdfunding campaign. Thiessen wondered about the ethical implications, given her long-standing interest in the financial burdens of living donation and transplantation. “For recipients and donors, there are multiple concerns about justice and equity,” says Thiessen, now a transplant surgeon at UW Health, and assistant professor of surgery at University of Wisconsin School of Medicine and Public Health.
Thiessen and colleagues conducted a study on organ donors or recipients who crowdfunded to cover out-of-pocket expenses of transplantation.3 The researchers analyzed newspaper articles on crowdfunding campaigns for organ transplant patients, to identify ethical and policy issues. Of the 231 patients identified in the articles, 42% were kidney recipients and 43% were thoracic (lung or heart) organ recipients. Ten percent of the articles covered at least one ethical or policy consideration, including violations of federal laws prohibiting donors from receiving “valuable consideration” for an organ, and accountability for fund usage. These are important ethical questions, according to Thiessen:
- Is it morally acceptable to make a patient’s ability to get waitlisted for an organ transplant contingent on crowdfunding success?
- Do all patients have access to the resources needed for crowdfunding?
- Does relying on social networks exacerbate disparities for patients with smaller social networks?
“For donors who raised funds in excess of their donation-related expenses, there are legal concerns about violating of the National Organ Transplant Act and the possibility that the excess funding could constitute an undue inducement to proceed with donation,” says Thiessen.
Transplant center policies and national regulations may need to be modified to address ethical issues raised by crowdfunding, conclude the authors.
“As a first step, transplant centers should ask patients if they are engaging in or plan to engage in crowdfunding,” says Thiessen. Centers could offer education to patients to avoid common crowdfunding pitfalls or could develop policies to address management of excess funds and fraudulent campaigns. “We recently conducted a separate study to determine if transplant professionals believe that there should be a center-level or national policy to address the ethical issues arising from crowdfunding. Results are pending,” reports Thiessen. Ethicists can help in these ways, says Thiessen:
- by continuing to identify aspects of crowdfunding that raise ethical concerns;
- by offering clear explanations of the underlying ethical issues involving crowdfunding;
- by describing the clinical implications of ethical concerns regarding crowdfunding.
“Empirical ethics research can evaluate the equity implications of crowdfunding and test interventions to mitigate any disparities that arise from crowdfunding,” suggests Thiessen.
REFERENCES
- Machado S, Perez B, Papanicolas I. The role of race and ethnicity in health care crowdfunding: An exploratory analysis. Health Aff Sch. 2024;2(3):qxae027.
- Kenworthy N. Like a grinding stone: How crowdfunding platforms create, perpetuate, and value health inequities. Med Anthropol Q. 2021;35(3):327-345.
- Mallepeddi S, Patel PD, D’Amico C, Thiessen C. Ethical and policy issues arising in crowdfunding for solid organ transplantation: A content analysis of newspaper coverage of recipient and donor fundraising campaigns. Transplant Proc. 2024;56(6):1216-1221.
