Learning to Build — and Maintain — Trust While Reporting on Rare Disease To tell the stories of families dealing with disease, journalist Jared Whitlock had to practice patience and empathy.

Editor’s Note: This is part of a series of dispatches from the Knight Science Journalism Program’s 2020-21 Project Fellows.

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It wasn’t my usual interview request. I’d had people open up to me about sensitive topics before — from reckoning with fertility fraud to clinical trial delays holding up hope. But this time was different. This time, I was reporting on families affected by rare disease — work that I was doing as part of my Knight Science Journalism Project Fellowship. I would need to follow subjects’ journeys over many months, over many vulnerable moments. And then there was the Covid-19 pandemic, which complicated the task of gaining journalistic access to sources. These were challenges that would ultimately test and stretch my abilities as a journalist and, along the way, teach me a lot about building sources’ trust — and maintaining it. 

My first challenge was finding families relevant to my reporting. I struck out on social media. But my breakthrough came from researchers who pointed me toward potential sources. (If I sound a little vague, it’s because only the first part of my project has published. Stay tuned.) The key point here is that I made clear to the researchers that this wasn’t a quick-hit story. It was a long-haul reporting endeavor.  

Then there was trust. Here I was, a stranger asking people to tell me their deeply personal stories. And as a freelancer who had yet to sign on an outlet, I couldn’t say at that point what, if any publication, would publish the reporting. 

I overcame their skepticism by outlining my reporting plans. I promised not to pose an overwhelming number of interview requests — and to be cognizant of busy schedules. I pledged to do everything possible to get the story right — no, I wasn’t chasing clicks. I shared my past clips that exhibited accuracy and nuance. It worked. 

Here I was, a stranger asking people to tell me their deeply personal stories.

These families, I believe, have spoken with me because they want to illuminate to the public what they’re going through. But I remain acutely aware of the fact that they didn’t have to talk to me — or anyone else for that matter.  

The journalism pantheon is filled with examples of reporters who turned unfettered access into compelling copy. David Simon, somehow, got to be in the interrogation room while the police grilled suspects. Jon Franklin was in the operating room for a risky brain surgery. But a pandemic complicates in-person interviews — and well, everything else. 

Recently, the surge of Covid cases driven by the omicron variant forced me to cancel a much-anticipated reporting trip. Instead of a notebook filled with feature-enriching anecdotes, I had to settle for Zoom interviews. And that’s okay. I didn’t want to put anyone at risk. Anytime I questioned whether a meeting should be virtual or in-person, I deferred to families. Throughout, I’ve remembered not to let their trust in me wither. 

Perhaps partly because of my deference, caution, and sincere interest in their stories, many of the sources and families I spoke with directed me to others. It’s one reason that what I originally envisioned as a single article has transformed into several; I realized that it would be impossible to fit everything into one piece. 

Last November, while discussing my work with other Knight Science Journalism Project Fellows, someone asked me about a family I’m following, and how I think that family views me as a reporter. I’m unsure. But I’m grateful that they shared their story with me.  

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Jared Whitlock is a freelance health reporter whose work has appeared in publications such as The New York Times, Wired, and Voice of San Diego, with support from USC Annenberg Center for Health Journalism and Investigative Reporters and Editors.