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Medical crowdfunding supports the wealthy and endangers privacy -- here's how to make it more ethicalJeremy Snyder, Simon Fraser University; Glenn Cohen, Harvard Kennedy School; Peter Chow White, Simon Fraser University, and Valorie A. Crooks, Simon Fraser University
Medical crowdfunding is a fast-growing practice in which online platforms are used to raise money for health-related needs. GoFundMe.com, the largest platform for medical crowdfunding, has raised $5 billion since 2010 and is currently raising over $750 million annually for medical expenses.
People use donated funds for a wide range of health-related needs, including direct medical care, prescriptions, medical equipment and the costs of travel to hospitals.
Donations from medical crowdfunding have allowed tens of thousands of people to afford medical care in a number of countries, saving lives in the process.
However, this practice raises serious ethical concerns around who benefits from it and how it impacts others. Medical crowdfunding is not likely to disappear any time soon. As a group of researchers who have been studying this phenomenon, we would like to share some evidence on its less favourable impacts and some suggestions for how to address them.
Medical crowdfunding is most likely to benefit people with large and relatively wealthy social networks who are media savvy and who can create sympathetic or engaging stories for prospective donors.
If these traits are most common in relatively privileged people, then medical crowdfunding will entrench or exacerbate socioeconomic inequality.
There is good reason to think this is happening. For example, our research has shown that in Canada, people crowdfunding for health-related needs tend to be from areas with high incomes, high levels of education and high rates of home ownership.
Read more: More than one in 100 Nunavut infants have TB
To address this, crowdfunding platforms should create resources to develop crowdfunding skills among campaigners. They can also follow the lead of organizations like Watsi and highlight disadvantaged groups on platform webpages and use donation pooling to distribute donations more equitably.
These platforms should also create opportunities for groups to assist those most in need and find ways to connect potential donors to such campaigns.
Some people crowdfund because their care needs are not being met through the health-care system or private insurance. Donated funds can help to address these immediate needs but not the issues creating underlying problems and so may make the causes of health-care needs less apparent.
Crowdfunding platforms should create opportunities to partner individual campaigns with philanthropic organizations that address background causes of health-care gaps. They can also share anonymized data with governments and health-care providers to identify patterns of need. This information can be used to advocate for reforms.
Campaigners should write about injustices they have experienced that led them to campaign for donated funds in their posted stories. They can also identify groups, political leaders or agencies that can be called upon to remedy these problems. Journalists reporting on campaigns should also highlight background causes of health-care gaps in their news stories.
Raising awareness of these injustices can be effective in creating change. For example, Natalie Jarvis could not afford the expense of relocation in preparation for lung transplantation surgery. She faced having to crowdfund these expenses or being transferred to palliative care. Public outrage at this story helped prompt her home province of Nova Scotia to increase the travel allowance for this and other treatments.
Medical crowdfunding campaigners are rewarded for sharing emotionally gripping stories that disclose personal information. They are also encouraged to use the recipient’s real name and share their diagnostic details, health status and treatment needs and plans, even for incapacitated adults and minors.
Doing so comes at a significant cost to personal and medical privacy. Browsing through medical crowdfunding campaigns online quickly reveals highly personal health details, images of recipients surrounded by medical equipment and information about their friends and family.
To address this potential loss of privacy, crowdfunding platforms should require campaigners to receive documented consent from recipients to share their information where possible. They should also advise campaigners to be especially cautious when sharing information on behalf of minors or adults who cannot give consent.
Campaigners and other members of the public also need better advice from platforms and privacy advocates on privacy issues and how to protect privacy, such as by blurring faces in photos.
Seeking unproven interventions
Some campaigns seek funding for medical interventions that are unapproved for use by government regulators or are not scientifically demonstrated to be safe and effective. These campaigns often make unsupported claims about safety and efficacy.
Crowdfunding platforms should encourage campaigners to be cautious about the claims they make when requesting funds for unproven interventions. Platforms could even alert campaigners to the potential risks of such treatments. They should also enable anonymized data exchanges with groups like the International Society for Stem Cell Research and the United States Food and Drug Administration to better understand and react to crowdfunding for unproven interventions.
There is evidence that some businesses selling unproven interventions steer clients toward crowdfunding. Platforms should use lists of problematic clinics or treatments to screen campaigns at risk of misinforming donors. They should also consider banning fundraising for specific providers and dangerous interventions.
Jeremy Snyder, Professor, Faculty of Health Sciences, Simon Fraser University; Glenn Cohen, Professor of Law, Harvard Kennedy School; Peter Chow White, Professor and Director of the School of Communication, Simon Fraser University, and Valorie A. Crooks, Full Professor, Simon Fraser University
Published on June 26, 2019