Written by Jessica Luan (Duke University ‘24)
Synopsis: GoFundMe is the world’s largest crowdfunding platform. Users connect with donors and raise money for soccer tournaments, classroom supplies, and everything in between. Increasingly, however, GoFundMe donors have become a significant source of funding for medical bills. Many users with chronic or incurable diseases turn to GoFundMe to raise funds to pay for expensive hospital bills, experimental therapies not covered by insurance, or medication. This situation raises ethical issues of patient privacy, online privacy, and healthcare “deservingness,” themes I will explore in this article.
GoFundMe helps users crowdfund for “the most important issues they are faced with,” says CEO Rob Solomon. Users can create fundraisers for in categories such as “creative,” “competition,” “business,” “emergency,” and “memorial.” But, surprisingly or unsurprisingly, “medical” is the largest category on GoFundMe: 1/3 of all money raised on GoFundMe in 2017 went to medical campaigns. 250,000 medical campaigns have been set up in total, raising around $650 million in contributions.
This should come as no surprise in a country where 27.5 million people lacked health insurance in 2018, and where medical bills were the single largest cause of consumer bankruptcy from 2005–2013. Even for people who have health insurance, lost income from extended hospital stays or experimental therapies not covered by insurance also pose major financial challenges. In the absence of policies that address systemic issues within the US healthcare system, GoFundMe and other crowdfunding platforms have become a makeshift solution, acting as a “last resort” for already vulnerable patients.
However, positioning GoFundMe as a stand-in for robust health policy raises numerous ethical issues.
First, GoFundMe does not alleviate health inequities, but rather amplifies them by commodifying and commercializing illness. Bake sales are a form of crowdfunding, but online platforms like GoFundMe are very different from a traditional bake sale where one might solicit donations from neighbors and people passing by. In digital crowdfunding platforms, one person’s campaign is thrust into a crowded marketplace — just one request among hundreds of thousands of others.
Bringing attention to an internet campaign is very different from publicizing a neighborhood bake sale — if there were 200 bake sales on a single cul-de-sac, each selling the same vanilla and chocolate cupcakes, why should a passersby stop at your booth? Similarly, what makes a donor donate to a given campaign?
In order to secure donations, users need marketing savvy — a University of Washington study of 200 GoFundMe campaigns found that users skilled in self-marketing, social media, and video production have a leg up in producing a successful GoFundMe campaign. Campaigners need to “sell” their story and themselves to appeal to potential donors. Patients upload heartfelt written updates, photos and videos of themselves and their families in hopes that their story will resonate with potential donors, translating into funds to pay their medical bills. PR firms have even sprouted up to help GoFundMe users optimize their campaigns.
This leads to an unequal, almost transactional relationship between users and donors. Patients divulge intimate details about their physical and emotional struggles with health issues to garner empathy and contributions from donors. Users give up privacy, often because they feel they have no choice, while donors give up money. Donating will most likely help the donor feel good by providing the opportunity to perform an altruistic deed and the resulting positive feelings. Conversely, 90% of medical campaigns in the University of Washington study didn’t meet their fundraising goals.
Campaigns with photos, videos, and personal touches often seem more authentic, increasing the likelihood that they meet their fundraising target. So do campaigns where the donated funds can fully resolve the medical issue at hand, such as crowdfunding to purchase a prosthetic. Unfortunately, most illnesses do not have a neat beginning, middle, and end. To assume so is at best naïve, and at worst, patronizing.
Thus, those who need the funds the most — patients with an incurable rare disease and limited time to live, for example — have fallen through the cracks. “These sites are being asked to fill in the gaps in the system, but they’re only filling gaps for people who have solvable needs,” says Nora Kenworthy of the University of Washington in a 2018 study.
Additionally, most campaigns spread along existing social networks of friends, family, colleagues, and acquaintances. This means that the patients who meet their fundraising goals are most likely wealthier and well-connected. For patients such as immigrants or service-industry workers, using GoFundMe to meet their needs is much more difficult.
The repackaging of a legitimate medical condition into an easily digestible story is problematic in other ways, too. Medical crowdfunding oversimplifies the question of who gets healthcare into one of merit and privilege, which introduces personal bias in the decision-making process. It raises the issue of health decision making and agency. Based on the quality of users’ photos, the sincerity of their updates, and their perceived deservingness, other individuals decide who deserves healthcare. GoFundMe’s algorithms amplify this phenomena, which should raise some eyebrows. One private company and individual users should not be responsible for matching healthcare funds to those who need it, as we cannot expect that they will execute this action with equity in mind. To do so is unreasonably giving individual private companies with expectations that we should instead reserve for large hospital systems, insurance and pharmaceutical companies, as well as state and federal governments.
Finally, there is the issue of privacy. Most people loath giving out their real names and birthdays on Facebook. GoFundMe users reveal so much more — name, age, medical condition, location, photos of themselves and their families to appear more “relatable” — not by their own volition, but often because the healthcare system has pushed them into a corner — they feel they have no other means to pay their medical bills.
And, once information is on the internet, it’s hard to control who might end up using that information. Other healthcare institutions (insurers, hospitals, private clinics) have an obligation to protect highly sensitive health data under HIPAA. But GoFundMe is not actually a healthcare company, even though it is de-facto the single largest provider of healthcare in the country. GoFundMe doesn’t have a legal obligation to safeguard patients’ healthcare data, and what is concerning is that tech companies are notoriously opaque about how they use — or rather, misuse — user data. Could insurance companies access health data from GoFundMe to deny those users healthcare coverage in the future because of their pre-existing conditions? For many of these users, GoFundMe is a last resort. Health data obtained when these users were in dire straits and under ambiguous consent should not be used as leverage against these people in the future.
One reason why doctors and nurses are among the most trusted professions is because of medicine’s commitment to privacy. We allow these relative strangers to prod and examine and inject and slice us, because we trust that they will do no harm. Increasingly, patients are sharing their physical and mental struggles on GoFundMe, like one might confide in a family doctor. But until GoFundMe implements stricter policy on data collection, marketing, and user consent to prove that they will not misuse the collected data, users should think twice before trusting strangers on a faceless digital platform like they would trust a physician.
Crowdfunding Platform and Healthcare Provider: Can GoFundMe’s Dual Identities Coexist? was originally published in The Startup on Medium, where people are continuing the conversation by highlighting and responding to this story.