Ethical issues complicate the benefits of medical crowdfunding
By Jeremy Snyder
Medical crowdfunding — using social networks and media to raise funds for medical treatment — is growing in popularity and visibility. Recent examples include an American university student seeking $30,000 on YouCaring to help pay for medical expenses related to his cancer treatment and a Canadian family asking for money on GoFundMe to move close to the hospital where their child was being treated after being savagely attacked by several dogs.
Given the high cost of medical care and gaps in — or lack of — insurance coverage, it is easy to imagine why an individual or family might resort to crowdfunding, and even easier to understand why it is often viewed as a lifesaver.
Crowdfunding websites like CrowdRise, Fundly, Indiegogo, and those mentioned above make it simple for users to promote their requests and update them via social media. The crowdfunding site GivingForward claims that it helped raise $65 million for 50,000 campaigns between its launch in 2008 and 2013. Keep in mind that most of the sites don’t offer the service for free. They typically collect fees ranging from 3 percent of each donation to almost 8 percent (credit card companies collect an additional 2.9 percent); such fees usually aren’t mentioned on a recipient’s donation page.
The rise of medical crowdfunding raises several ethical issues. As I explore in an article in the Hastings Center Report, these include issues of fraud and misinformation, fairness, perpetuating systemic injustice, efficient use of the funds raised, privacy, and shifting the valuation of health care. I focus here on privacy and equitable access to health care.
Medical crowdfunding campaigns typically include many personal details, including the recipient’s name, medical condition, financial situation, and regular updates on his or her health. These details are usually accompanied by photos and videos depicting the recipient with friends and family, or in a hospital room surrounded by medical equipment. Yet we typically assume that that this kind of deeply personal information and imagery is private.
Individuals who turn to crowdfunding seem to voluntarily forgo this privacy in order to raise money. Yet many recipients feel that they don’t have an alternative to crowdfunding. Choosing to withhold private information is not an option for crowdfunding campaigners, since they are typically required to use their real names in their campaigns. They are also told that providing and widely sharing photos and detailed information is necessary to reach their crowdfunding goals.
Some crowdfunding campaigns are run by a recipient’s parent or by other family members. Sharing another person’s personal information clouds the issue of consent about the public disclosure of private information. If the recipient of the crowdfunding drive is an adult, his or her medical condition may make it impossible to give consent to these disclosures — or may not even be consulted about what information is shared. For children below the age of consent, even well-meaning parents and other family members running fundraising campaigns may not consider the ramifications of these disclosures on the child’s future.
Medical crowdfunding could have negative effects on equitable access to health care. The likelihood of a crowdfunding campaign reaching its funding goal may depend in part on factors such as the kind of treatment needed and the reason for the campaign. Differentiation by the popularity of the medical cause or sympathy for the recipient goes against principles of treating patients according to the severity of their medical needs or aiming for the greatest good in treatment. In other words, funding according to popularity runs against evidence-based attempts to use our health care funding as fairly and efficiently as possible.
Other factors, such as the recipient’s physical appearance, social connections, ability to get media attention for the story, and online communication skills are also likely to affect a campaign’s success. If those characteristics are correlated with the recipient’s position in society, then medical crowdfunding will have a tendency to benefit mostly those who are already in a relatively advantaged position.
One might say that this inequality shouldn’t matter as long as no one is being hurt by medical crowdfunding. But here, too, there is reason for concern. If the need for medical crowdfunding is created by shortcomings or injustices in the recipient’s health care system — primarily insufficient insurance coverage — then this way of raising money addresses only the symptoms of these problems. That in itself isn’t a concern. But if the popularity of medical crowdfunding shifts attention away from these problems and diverts energy from addressing them, then crowdfunding could delay or prevent reforms that would benefit the vast majority of people who do not use crowdfunding or are less successful with it.
There is good reason for this concern. My colleagues and I have shown that medical crowdfunding campaigners largely don’t address the underlying, systemic causes of their need. Instead, crowdfunding sites urge campaigners to present positive, uplifting stories rather than critique their health systems.
Raising the ethical issues posed by medical crowdfunding doesn’t mean it is a bad endeavor or should be avoided. Instead, it highlights the need to set norms that protect patient privacy, make crowdfunding more accessible regardless of social position, and harness its power as a vehicle for positive social change. One means of doing that may be to encourage more transparent, nonprofit platforms such as Watsi as alternatives to the dominant, for-profit players.
Greater awareness of these concerns should help potential campaigners and donors make more informed decisions when considering whether to participate in medical crowdfunding.
This article originally appeared in STAT News on February 1, 2017: www.statnews.com/2017/02/01/medical-crowdfunding-ethics/