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Attempt to ‘crowdfund’ kidney surgery prompts exploration of ethical issues surrounding coverage Date: 02/05/16

Jackie Farwell

By Jackie Farwell, Bangor Daily News 

When Christine Royles painted a plea for a kidney donor on the rear window of her car, she had no idea of the ethical dilemma she was about to provoke.

As we covered the hospital’s response to the crowdsourcing effort behind her surgery, I worked with Anthony Ronzio, the news and audience director at the BDN, to sort through the medical crowdfunding editorial policy questions inherent in medical crowdfunding. In so doing, we wrestled internally with the role of media coverage in Royles’ ultimately successful search for a donor.

Many outlets reported on her plight, publicity that no doubt directed many dollars to the fundraising campaign for the man who agreed to donate his kidney to her. The outpouring of generosity threatened to derail the transplant, in part because the hospital was leery of federal regulations that prohibit individuals from profiting from the donation of an organ.

Royles’ case, while unprecedented in Maine, raised questions about medical crowdfunding that we knew would persist with the popularity of websites such as GoFundMe and Indiegogo.

We re-examined our coverage from a couple of vantage points: What did our audience need to know about this trend, and how should we cover individual crowdfunding campaigns in the future?

The former proved the easier question to answer. We addressed many of the ethical implications in the crowdfunding story that used Royles as a case study. I also did two other stories: one about the kidney donation surgery and one about Royles’ recovery.

But I hit some roadblocks in my reporting. After I interviewed a local man who crowdfunded thousands of dollars for his new baby’s medical care and related expenses, he backed out after informing his wife that the story would explore the ethical questions inherent in medical crowdfunding. In a way, I couldn’t blame them. Naturally they considered those questions only after their son had recovered from his life-threatening ordeal. At that point, they feared upsetting their donors by acknowledging the ethical gray areas.

On the other hand, Royles had already been forced to reckon with the ethical implications because the hospital hit the brakes on her transplant for a time to sort them out.

When Maine resident Christine Royles went to the Internet to pay for a kidney transplant, her crowdfunding campaign also raised ethical concerns for a local newspaper. (Photo by Troy R. Bennett/BDN.)

We’ll continue to report on the issue with those ethical implications in mind, noting that these appeals reveal troubling shortcomings in our health insurance system.

We also set out to develop an editorial policy aimed at medical crowdfunding. Online fundraising for a honeymoon or a new car is one thing, but lives are often at stake when people turn to the Internet to pay for their health care. As we presented in the story, online crowdfunding raises ethical questions that set it apart from a spaghetti supper at the high school gym.

News outlets’ ability to convert readers into potential fundraisers has become more overt with the ease of online donation. We know our coverage can amplify a campaign’s reach, so we wanted guidelines for when and how to cover them.

While we’re still in the process of developing a policy, here are the main points of discussion:

  • Individual campaigns must be unique to warrant coverage, whether in the amount of money raised, the public response, the personal story, or other factors. Royles’ case was unique in that it presented the hospital with unprecedented ethical and legal questions that delayed her transplant.

  • We must confirm the facts of a campaign if we cover it. That could mean asking for medical records or interviews with doctors, a potentially challenging step when patients are in vulnerable and time-sensitive situations.

  • In some stories, the campaign itself is the news hook. In others, the person’s health struggle is the focus, and the campaign is a secondary element. Are we obligated to do all or nothing, either agreeing to mention these campaigns or write no story at all?

  • Do we link to the campaign? It seems like an obvious step and readers may want a link if they’re moved to donate or learn more. But should we consider omitting links to avoid the amplifying effect? We don’t want to set ourselves up to pick winners and losers.

We don’t have all the answers to these questions, but we’ll keep seeking them. We welcome any thoughts you’d like to share.

Jackie Farwell (@JFarwellBDN) is the enterprise editor for the Bangor Daily News in Maine.