An object from which something is obtained: Redefining our definition of source
When the Investigative Journalism Bureau (IJB) broke its story about the clinical trial industry in September 2024, Masih Khalatbari, one of the journalists on the investigation, was hopeful that a public reception would mean audiences sympathized with the sources at the heart of the story. Those sources, he says, “put themselves in danger so we could have medications that might save lives or relieve pain.”
Khalatbari and the IJB team spent years examining the clinical trial industry and discovered startling gaps in testing oversight — gaps that exposed participants to severe health risks. The reporters found that the payment model and structure of clinical trials incentivized participants to underreport health information during recruitment and side effects during trials. The accompanying documentary, Bodies for Rent, detailed the experiences of two trial participants, Franco and Raighne.
Since Franco made the move from Mexico to Canada several decades ago, he’s lived in cities across Canada and has held jobs in a variety of industries, including factory and service work. The lack of stability and income led him to pursue participation in pharmaceutical trials where he could sometimes make more than he would in his other jobs.
When he’s free from trial observations, Franco enjoys Roman art and historical sites.
“I have replica Roman helmets from the second century before Christ to the third century,” Franco tells the Review of Journalism. His love for art was passed on to him by his mother.
“As soon as I move into a new place, I put a little [painting]. I buy, you know, nothing fancy, but I try to make it look nice,” he says.
He found his way to clinical trials by accident. He saw an ad on a bus and later heard about them through a friend.
“It was my second year [living in Canada], I was living in some shitty city,” says Franco. “I didn’t like my apartment, so I really wanted to move out of the ghetto. I did a study and I thought it was gonna last a few, maybe two or three studies, maybe a year or two and then I was going to move into better things in life. That didn’t happen.”
Franco says that seems to be the case for a lot of people doing clinical trials.
“For some reason, I got stuck doing studies forever.”
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In the IJB investigation, reporters interviewed bioethicist Carl Elliott who raises concerns about how research companies conduct clinical trials. Elliott talked about the hunt for people in precarious situations, including those facing debt, those without open bank accounts, others who might have encountered law enforcement, and immigrants.
Scientific research has a long track record of subjugation. The Nuremberg Code was born out of the horrific violence Nazi doctors committed and was meant to establish ethical principles for research on humans. It has continuously been ignored, including in Canada.
In the years following its codification, the Department of Indian Affairs of Canada restricted adequate nutrition for Indigenous children in six residential schools in the name of science. Even as its research killed children, the experiments continued. For much of the 20th century, Indigenous patients at Indian Hospitals received medical procedures and experiments without their consent, including experimental tuberculosis vaccines.
Colonial racism persisted into the 2000s; from 2014–2016, an American brain scientist conducted “brainwave training” on primarily Indigenous children and promised false outcomes to participants such as “recover[y] from anxiety and trauma.”
The IJB team’s reporting uncovered a system that allows for — or even encourages — marginalized research participants to conceal their side effects. The investigation revealed a practice in the industry known as backloading, which refers to a payment model in which a research company pays a large sum of money only at the completion of a trial. The IJB writes that Franco “only gets paid in full if he completes the entire study. Leaving early because of an adverse reaction means he’ll forfeit more than $15,000.”
Khalatbari says reporting on topics like this one illuminates systemic issues the audience didn’t know about. The hope, he says, is that IJB’s work inspires policy change from Health Canada and the private research firms hired by pharmaceutical companies, called contract research organizations (CRO).
But what would policy change look like in the case of the clinical trial story? Among the suggested courses of action is to enforce consistent 30-day washout periods between consecutive trials that would allow participants to rest. Currently, participants can technically enroll in successive studies because not all research firms share data across provincial borders. The IJB mentions that some Canadian CROs choose to track participants via fingerprint scans to avoid over-enrollment while places like the U.K. mandate oversight via a national database with participant data. Another reform suggested by some research ethics experts — including founder of Human Research Accreditation Canada Janice Parente — involves participants being paid hourly to minimize the risk of undue influence. As mentioned by the IJB, there could also be a cap on how much compensation a person could receive from clinical trials each year.
Of course this kind of policy amendment leaves the individuals at the centre of the story at risk, cutting them off from essential income and facing consequences that could permanently damage already vulnerable livelihoods. When that happens, what obligation do we, as journalists, hold? What does it mean when our reporting protects the many but wounds the one? And what if that one, like Franco, belongs to a group already burdened by precarity, where harm lands deeper and lingers longer?
A Question of Journalism’s Duty of Care
The IJB’s director, Robert Cribb, believes this investigation exposed “the exploitation of poor people [and] the validity of scientific data.”
In the IJB’s story, the validity of pharmaceutical data is questioned through the citation of factors like enticing participants to hide their side effects: backloading, large payouts, company-provided debit cards, and bonuses of “up to thousands of dollars” for finishing a study.
Given that the system incentivizes participants to hide their participation in other studies and not disclose detrimental impacts to reap the financial rewards of participation, the data used to approve drugs for public consumption could be compromised, writes the IJB. According to the IJB, Health Canada also only inspects a “small fraction” of trials. Health Canada wrote in a statement to the IJB that it rigorously oversees clinical trials, which seems contradictory to its “risk-based approach.” In this sense, the reporters alert the public to a probable health risk that residents across Canada have an interest in knowing.
But what about the storysharers in the investigation? Many, like Franco, were anonymous sources who say they risked being “blacklisted” by CROs, to share their story.
“I was afraid that because I mentioned the way people used to cheat, that I was going to get banned from those clinics,” says Franco. He told me he wanted to share his insights for the IJB article and Bodies for Rent for multiple reasons, such as wanting people to know how research companies “exploit people [and] manipulate information.”
Franco wasn’t focused on the policy change that could follow from the reporting, but the IJB team discussed in its newsroom what may happen after the investigation was published.
Another reporter on the story, Max Binks-Collier, says the team talked about what reform may mean for the people they interviewed and their ability to make a living from this work. But ultimately, that discussion ended on a traditional interpretation of journalism’s role and responsibility; giving preference to the public interest over that of the storysharer.
Meredith Levine, a journalism lecturer and former member of the Canadian Association of Journalist’s (CAJ) Ethics Advisory Committee, writes in a 2014 Q&A with the CAJ that “journalists shouldn’t transform themselves into social workers, risk experts, or advocates for anyone,” but that gaining consent to share someone’s story is only “informed” if the journalist has communicated the possible impact and consequences of publication to the storysharer.
In Levine’s view, properly informing the people we interview about the potential outcomes of our reporting is not in opposition to the public interest. Instead, not doing so amounts to a failure of upholding “truth, accuracy, fairness, and the public good,” she writes. She believes it’s logically and ethically incongruent to not gain proper consent from sources “in the name of serving the public interest.”
“We’re doing this because we think there’s a problem with the system as it exists,” Binks-Collier says. “I don’t think it’s proper to stay silent about a problem that exists just because there are some people who are benefitting from it, even if the people benefitting from it are very vulnerable and poor, because they’re also exposing themselves to serious risks.”
Indeed, this is a difficult balance to strike.
The question of risk and vulnerability also concerns Khalatbari. It is possible to negotiate these often competing needs, he believes, and there’s adequate room for sharing the truth as you discover it while also honouring your duty of care to sources.
“In some ways you need to balance them,” he says. “Vulnerable people, more times than not, also have an interest in the public knowing the truth. Even if it negatively impacts them.”
“We can’t put it on journalists to fix these problems, to achieve social justice alone. But I think journalism is part of the process, and then we need to look to the rest of society to say, ‘okay, how do we advance this?'”
He says participants who concealed side effects had recognized it was something they ought not to do, but “wanted the public to know that the clinical trial system created an ecosystem which allowed deception.” At the same time, he acknowledges “a certain anxiety in thinking about how you might have a negative impact on somebody’s life just by writing something.”
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Some reporters believe their duty of care differs depending on the type of source. Cribb holds this belief. He says he and his team think through potential risks posed to vulnerable storysharers.
“We have a duty to explain to them: ‘We’re going to do our best to protect you…. You’re not going to be surprised by anything,’” says Cribb. “We don’t give them copies of stories, but we’ll go through line-by-line, the sections that involve them. We wouldn’t do that for a politician [or public figure.]” He adds that Franco was engaged in what they were doing and they explained the potential risks.
But there are limits to this care. At the end of the day, Cribb says his “boss is the public, it’s the public interest.” He wouldn’t show an entire copy of a story to a source, even a vulnerable one, because he says that would erode the public’s trust in independent journalism.
When journalists think about our responsibility to shed light on issues of public interest, we should remind ourselves of our duty of care to sources. What kinds of conversations, reactions, and amendments could our reporting elicit, and how could that impact the people courageous enough to share their stories? Although we’re not at the policy-making table, these are the questions we should ask ourselves before charging forward on stories that could change lives.
There might yet be a way to do the work while centring fairness and care towards vulnerable people.
In recent years, The Solidarity Journalism Initiative out of University of Texas at Austin has been gaining steam. The project, run by assistant professor and the author of Solidarity in Journalism: How Ethical Reporting Fights for Social Justice Anita Varma, is trying to address this question by providing resources and support for journalists covering issues that could put people’s basic dignity at risk. Her initial exploration of a structural approach to solidarity journalism was based on a study of communities facing homelessness in San Francisco. Over time, Varma produced a solidarity journalism guide that provides a systematic approach to reporting that centres the people most impacted by unjust policy, events, and discrimination.
People who share their stories are the ones who deserve the most care, while recognizing that journalism is just one part of the larger ecosystem of a democracy. Varma says, “We can’t put it on journalists to fix these problems, to achieve social justice alone. But I think journalism is part of the process, and then we need to look to the rest of society to say, ‘okay, how do we advance this?’”
While considering the risks posed to sources, Varma says journalists must strike a balance when interacting with storysharers. She says while it’s vital to consider their safety, we ought to also weigh their right to share their story if they willingly choose to do so.
“If I’m a consenting adult and I say I want to do this, then doesn’t it kind of infantilize me for a journalist to then say, ‘Well, that’s too bad for you. You want this story told, but I’m not going to tell it,’” says Varma.
Respecting one’s autonomy while also considering the risks posed to them is something Chicago-based journalist Alex V. Hernandez thinks a lot about. His work on immigration platforms newcomers’ voices over the “top down” approach of many news outlets, which traditionally feature “immigration attorneys, elected officials, and nonprofits,” he says.
Throughout the interviewing process, Hernandez informs sources like undocumented immigrants about the risks some of their statements might pose. He double-checks with certain people whether they want to include details like last names, street intersections, or employment.
For one story, Hernandez spoke with a father who was running for a position on their child’s school council at a Chicago public school but was facing obstacles as an undocumented person. Hernandez asked him if he was sure he wanted to use his last name. The father was “adamant” on being referred to by his full name.
Hernandez relayed what the father said to him: “I should be putting myself out there for other undocumented people who might be afraid to have a say in their school council’s future just because they’re undocumented.” Hernandez respected his decision to be named, but only after he explained the risks naming may present to the father.
In the IJB article, the reporters highlight research models in other countries as examples of “better clinical trial oversight.” One example is France, where the law sets the maximum amount of compensation around the equivalent of $9,000 per year.
Raighne Hogan was one of the primary characters featured in Bodies for Rent. Hogan is an artist and the founder of 2dcloud, a small publishing company focused on alternative comics, graphic novels, and magazines. He turned to clinical trials as a last resort to get 2dcloud out of debt and turn it into a sustainable business. He wasn’t discussed in the IJB article, but when the Review asked him about different payment models, such as an hourly one, he said it would “definitely be used as a way to pay less.”
Hogan sees the need for more regulation but worries it would reduce the amount of money he could generate and make it harder to participate at all.
“[That] would impact me in a way I wouldn’t want it to right now,” he says.
He believes that “if you get sick in a study, that you [should] get paid out the full amount. If you’re getting sick, because of the drugs that you’re given, that’s certainly not your fault.”
Instead of relying on other western countries to demonstrate viable “solutions,” perhaps we should be asking the participants themselves explicitly what they’d like to see change. We need to start viewing them as experts, too.
For example, Varma’s solidarity journalism framework prioritizes the perspectives of those with lived experience and therefore expertise. Varma says solutions-based reporting and solidarity journalism don’t necessarily overlap, but that the best solutions reporting lets us hear from people affected, not just organizations or institutional bodies advancing a proposed resolution.
“Vulnerable people, more times than not, also have an interest in the public knowing the truth. Even if it negatively impacts them.”
Perhaps an answer to addressing the public’s need for sound pharmaceutical data while respecting the basic needs of the participants in this story would be to hear about potential solutions or desired reforms from the party directly involved in both: participants. Not only are they at the receiving end of potential policy revisions, but there is also no pharmaceutical data without them.
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The impact of the IJB article and the Bodies for Rent documentary is still unknown because there hasn’t yet been a coordinated, large-scale public reaction or policy reform from Health Canada. But one case of investigative reporting that did have a tangible impact is an example from The New York Times on child labour.
Journalist Hannah Dreier published the first article in the “Alone and Exploited” series in February 2023, which detailed the presence of child labour across the United States. In the article, “The Kids on the Night Shift,” she portrays the dilemma that children like 14-year-old Marcos Cux faced while far from their parents and supporting themselves.
Marcos was in the United States to send money back to his family in Guatemala, who knew it would be much harder for them to immigrate as a family. The pandemic hit them hard. They were skipping meals and couldn’t afford formula for Marcos’s infant sister.
In her reporting, Dreier discovered that child employees were handling cleaning agents that could burn skin, operating hoses with 130-degree-Fahrenheit water, and working with equipment that could severely injure limbs. In places like Virginia and Illinois, Dreier showed how Perdue Farms, Tyson Foods, and Hearthside Food Solutions relied on children working overnight cleaning shifts.
Dreier’s reporting won her a Pulitzer Prize and “ushered in waves of impact, which included congressional hearings, a White House crackdown, and reforms in multiple states,” as was reported on Poynter. Days after she published the first story, the Biden administration announced they would launch Department of Labor initiatives to investigate violations and give more support to unaccompanied children. Then–press secretary Karine Jean-Pierre called the findings of the Times investigation “heartbreaking” and “completely unacceptable.”
Investigations into Hearthside Food Solutions and Perdue resulted in $4.5-million and $4-million (U.S.) settlements, respectively. But the children who worked for Hearthside were only entitled to up to half that money. The other half was allocated for administrative costs, and any remaining amount will go to an enforcement fund run by the Illinois Department of Labor. Similarly, a Perdue spokesperson said half the money would go to a fund for the affected minors with the other half going to charities.
How do we grapple with the fact that this has effectively put an end to their primary source of income — one often relied on for the sake of their families and their own sustenance. For Marcos, Dreier wrote that he was making roughly $100 per shift, which at the time was “more than he could make in a month back [in Guatemala].” Only one-third of these children come to the States to live with their parents, according to Dreier’s reporting. The children “send cash back to their families while often being in debt to their sponsors for smuggling fees, rent and living expenses.” Dreier interviewed someone who connected unaccompanied children with sponsors and said in recent years she had observed more human trafficking reports.
What happened to these children after the reporting, subsequent government clampdown, and company settlements? In her first article of the series, Dreier found that when one company got fined after an investigation, the affected minors would find factory work in a neighbouring town. Perhaps the former child employees of Hearthside Food Solutions and Perdue Farms found work nearby.
It’s a strange thing to wonder if a market for child labour persisted, but what is the alternative for a child owing dues to a so-called “sponsor,” who is abusive and demands they pay off debts? Compounding the issue, the Health and Human Services Department only calls minors a month after they’re placed with a sponsor and “tens of thousands” of children are sent away with “little but the phone number for a national hotline,” writes Dreier.
In an interview with WBUR-FM, a public radio station in Boston, Dreier said “the teachers feel really torn. They see that children are being put in situations that a child should never be put in, and yet there is no support for these kids…what’s the alternative? What would be better? It’s not clear.”
Do these children and their parents consider the changes that have come from the reporting to be desirable? How are they getting by now?
Humanity-first reporting
For Hernandez, responsible reporting does not need to reinvent the wheel. Instead, he sees “old-school, shoe leather source- and beat-building” practices as the foundation for fostering rapport with sources. He says part of building trust with people is affording them agency throughout the writing process. An aspect of granting proper autonomy is free, prior, and informed consent.
Hernandez explains the process in an initial conversation before asking someone for an interview. If they agree to an interview, he later checks in and tells them what material he used before sending a draft to his editor.
“This is one of the last points on the highway to get off on an exit,” says Hernandez.
He says he never pressures them to affirm their comfort at that point and would find another source if needed. This continual process of ensuring proper consent is not something he’d do with a police commander or city councillor.
“It’s a very different set of rules when you’re dealing with someone who fled a war-torn country and barely survived fleeing, and has arrived here and is trying to build their life,” he says. “I want to give them as much agency in how they share what they’re going through.”
In giving particular care to marginalized sources, he says that doesn’t mean he treats accountable sources unfairly. It doesn’t mean he “takes sides.” Also, just like he checks in with immigrant sources when he’s off the clock and not on deadline, Hernandez says he does the same with sources like city councillors.
Journalists frequently come up against moral quandaries. Notions like trauma-informed reporting, minimizing harm to sources, and ethical techniques for interacting with vulnerable sources are not new. But perhaps a question we should consider in our newsrooms before publishing work that tells the stories of assailable people is how to find a balance in shedding light on issues of public concern while considering the long-term well-being of storysharers. Sometimes these responsibilities can coexist, at other times, they’re at odds with each other. Regardless, an ethical practice of sharing these stories involves the active participation of storysharers in outlining what solutions and better policy might look like.
While journalism is a career — not a hobby or typically seen as advocacy — the people who are courageous enough to share the most intimate details of their lives also need to put food on the table.
When reform doesn’t end up coming or change does come but it’s undesirable to the people at the heart of a story, the public and politicians can still sleep at night. But for the people who share their stories with us, this is not a story: it’s their life and livelihood — we ought not to forget that when deciding how, and if, we tell these stories.
Hernandez says he follows a guiding journalistic principle from humourist Finley Peter Dunne when doing his work: comfort the afflicted and afflict the comfortable.
