Crowdfunding Healthcare Could Cost More Than You Think

June 07 18:00 2017 by ushadmin

Facebook recently announced that it is getting more involved in the personal crowdfunding business. Individual users will have the option of placing a “donate” button on their posts to raise funds for six categories of causes that include personal emergencies and health-related expenses.

Given the enormous user base of Facebook, this practice will most likely benefit many people. But, as a bioethicist researching issues related to medical crowdfunding for the past two years, I am concerned about this development, particularly with regard to privacy.

Growing popularity of medical crowdfunding

The crowdfunding platform YouCaring reported that medical campaigns were its fastest-growing fundraising category in 2015. Since 2012 YouCaring has raised US$240 million for these campaigns. Similarly, another crowdfunding site, GoFundMe, has raised $930 million for medical crowdfunding campaigns.

Crowdfunding for medical expenses began with the development of personal crowdfunding platforms such as YouCaring and IndieGoGo in the U.S. a decade ago. Campaigners request funds for direct medical expenses such as paying hospital bills for cancer treatment or dental care. Help paying indirect medical expenses is also commonly sought, such as support for time off work and funding for travel to hospitals for treatment.

On the face of it, expanded access to funds through medical crowdfunding on Facebook and other platforms is a good thing. Americans with medical needs and who have limited or no health insurance face either having to forego necessary medical care or having their savings wiped out.

Even in countries with universal medical coverage like Canada, medical crowdfunding is often used for what is considered nonessential care (for example, dental care or fertility treatments) or other health-related expenses such as travel to access medical care.

Thus, medical crowdfunding can literally be a lifesaver.

Issues around privacy

However, there is a downside. As my research shows, medical crowdfunding has the potential to seriously undermine the medical privacy of users.

Typically, medical crowdfunding platforms (including but not limited to Facebook) urge their users to be as open as possible about the recipient’s medical condition. They also ask users to give regular updates about the progress of their medical care.

These posts regularly include pictures and videos of the recipient and also images from doctors’ offices and hospital beds. This sharing of information amounts to a vast loss of privacy.

Medical emergencies and medical need are situations of great vulnerability, and often highly bodily invasive. Many patients might prefer to keep these details private or at the least limited to a select group of friends and family. However, these images are on display at any time on medical crowdfunding platforms.

For example, one of the campaigns featured at YouCaring leads off with an image of an emaciated woman in a hospital bed, surrounded by tubes and wires. In this campaign’s description, the woman reports severe symptoms including her teeth “falling apart” and her extreme financial distress…