Topics in Health: Lessons From The Field
Employing Human Testing to Tell Stories about Environmental Health Risk
It's not easy for journalists to undertake testing on humans, nor should it be. But there are stories and situations where it is definitely warranted.
The development of sophisticated machinery to analyze blood, urine and hair has made it possible to test humans for chemicals linked to cancer, developmental disabilities, and other problems, a process known as biomonitoring. Human testing offers a way for journalists to help their audiences understand the potential impact on real people of the chemical pollutants inside the home and emitted or discharged by factories, trucks, and other sources.
As a reporter for the Los Angeles Times, I covered air pollution and its clearly documented harmful effects for several years. I always looked for ways to attach human faces to the statistics and was frustrated that federal law, ethical concerns, and what sometimes seemed like self-protection kept doctors, regulators, and academics from helping me find people with health conditions linked to chemical exposure.
As the grateful recipient in 2009 and 2011 of reporting grants from the Dennis A. Hunt Fund for Health Journalism, I decided to try to put faces on the numbers by zeroing in on people living in Maywood, a heavily polluted community just 10 minutes from downtown Los Angeles.
It was perhaps the most daunting task I have undertaken as a reporter. That said, I got to dig deeper and learn more than I would have ever imagined.
My story package, in both English and Spanish, appeared November 3, published by California Watch.
It exposes the chemical burden on the bodies of four members of a family that has lived for 15 years in one of Los Angeles' most industrialized neighborhoods. They are among the 50,000 residents – 98 percent Latino – who live in a square mile community downwind from fish processing facilities, open-air rendering plants, one of the West's largest battery smelters, and one of the nation's busiest truck routes. A Superfund site is half a mile away. While it was impossible to link their chemical exposure levels to specific sources, they were far higher in several instances than average Americans'.
Here are tips gleaned from my experience that may help you if you decide to undertake similar reporting.
Before you get started with a project that involves human testing, think long and hard, especially if you are a freelancer. The time and costs involved are substantial, and the tests may or may not yield results worth reporting. Make sure you have buy-in - literally - from an editor and funders before you begin. You'll probably need a minimum of $10,000 for just the testing. You and your news organization should also be realistic about whether you can afford months or even a year or more's worth of work on the project, since arranging and conducting proper testing takes time.
What To Test For
There are 80,000 chemicals registered for use in the United States. To decide which chemicals to look for in a typical family living in the shadow of heavy industry, I combed through government records to identify top pollutants in southeast Los Angeles. Thanks to my previous reporting on the environment, I had a head start with sources and a working knowledge of pollution studies and databases.
A key source for me turned out to be lists of chemical emissions at 12 different locations across Los Angeles County. I found them buried in the back of a regional air board report. I used data from Huntington Park, right next door to Maywood and close to the same industry. Also important were drinking water data obtained from the California Department of Public Health and community groups.
Environmental health groups have often focused on the risks of consumer products in homes, but I wanted to test for toxics to which local residents might be exposed from industrial emissions. To narrow the list of chemicals for which we would test, I quizzed academics who had done studies linking different pollutants to specific health effects. I queried government scientists, including the head of the biomonitoring program at the U.S. Centers for Disease Control and Prevention, as well as California agency researchers.
They told me that tests had not yet been perfected for certain substances for which I wanted to test, such as particulate phase polycyclic aromatic hydrocarbons (PAHs) in diesel exhaust. I laid out different menus of possibilities to the main project editor, and we narrowed the list to 25 heavy metals and dioxins.
Whom To Test
In search of a family willing to be tested and have their results shared publicly, I went door-to-door around a Superfund clean-up site and along other streets near industry and spoke with numerous community officials. I found an intelligent, outraged woman whose 38-year-old husband had a type of cancer linked in studies to the industry in which he worked. They worried about their two daughters being exposed to dirty water and air pollution as well.
At first they were eager to be tested, but as the day neared, they changed their minds. I began the process again, phoning more community groups, area doctors, and local officials for recommendations. The subjects had to have lived in the same place for several years to make the results valid. Eventually, someone knew someone who knew the Martins: Josefina, now 45, her husband Salvador, 49, and their children, Anaiz, 21, Adilene, 22, and Sal Jr., 18.
Josefina Martin's story poured out as soon as we began to talk. She had lost her father a year earlier and feared asbestos played a role. She had grappled for two decades with her beautiful, quiet younger daughter's exposure to lead, as well as other family members' illnesses: asthma, an ovarian cyst, depression, skin rashes, chronic diarrhea. The family had lived in their home for 15 years and was sick of brown or yellow water pouring out of their shower and faucets.
Josefina and her three teen and young adult children agreed to be tested, though her husband declined. The family agreed to make their results public because they wanted to help others worried about pollution in their community.
It is important that test subjects and readers understand that there's often no way to definitively link someone's chemical burden to exposure to emissions from a particular source or to say with certainty what their risks are of developing a particular disease. The test results will offer a highly accurate view of the chemical residues in their bodies at that point in time.
It is critical to make sure whomever you want to test is completely willing and is educated fully about what will occur, from the taking of blood samples to the possible consequences of publication of stories. There are real ethical considerations here.
With the help of another reporter, Douglas Fischer, who had done a biomonitoring project for the Oakland Tribune, I prepared lengthy consent forms in Spanish and English and read them to the family members before they signed.
It is also vital for both you and the people you are testing to have expert resources available to talk to your subjects. I found doctors and environmental health specialists who had undergone biomonitoring themselves and who agreed to talk to the Martins before and afterward. None would serve as their medical doctor in terms of diagnosing or treating them, and it was important to make that clear to the Martins.
Where And How To Test
Finding reputable labs was complicated. These facilities are not the same as clinical or occupational labs where people go to be tested for drug use or exposure to workplace hazards. Biomonitoring laboratories use sophisticated, expensive machinery to test for trace elements of chemicals in the human body, mirroring strict government methodology. There is no central list, and government sources were loath to recommend any. But it is important to use a reputable lab so that your results are legitimate and can withstand challenge.
There are waiting lists at some, particularly for dioxin testing, and they may ask you for extensive details about your project. I researched labs online and ran them by experts.
I initially settled on Axys Analytical Services, Ltd., a highly recommended Canadian lab, for the dioxins, and Brooks Rand in Seattle for the heavy metals. Whichever lab you go with, don't expect anyone there to interpret the results. You will need independent scientists and others knowledgeable about your substances to dissect the numbers.
You will also need a local lab to draw the blood, collect the urine, or obtain hair samples. Finding one took some time, but the regional director of a major clinical chain ultimately agreed to take the samples for free.
After you place your order with the biomonitoring lab, you need to be sure to read the instructions in the package they send you and make sure that you and the local lab that will be taking the samples understand them. You should fill out all customs, chain of custody, and other forms ahead of time. There will be a tight window between the taking samples and shipping them for proper overnight delivery. After all your hard work, you want things to go right.
Expect the Unexpected
The night before the Martin family's testing, a new roadblock appeared. The regional clinic director said he wanted me either to obtain approval from an Institutional Review Board (IRB) or obtain a waiver from the process before he would allow his staff to proceed.
IRB approval is a lengthy process that scientists undergo before they can do human testing. It helps assure that the people who will be tested understand any risks and is a requirement in academic studies that will be subjected to peer review. Getting approval can take as long as a year.
Douglas Fischer, now editor of DailyClimate.org, believes that an independent review could both strengthen a reporting project and provide protection for the subjects. But I felt that getting a waiver was preferable for my project.
Because the University of Southern California administers the Hunt grants, I was fortunate to be able to quickly get a waiver from the head of USC's IRB program, who understood that my project was journalism, not scientific research. You may not encounter this pitfall, but you should be aware of it, as labs are more accustomed to dealing with academics than journalists. Be prepared to argue that journalism doesn't have an institutional review board mechanism or to possibly go through a lengthy process to gain approval or a waiver.
On the day that blood and urine samples were taken, Josefina and her children were listless from fasting, but resolute. As soon as they were done, I offered them dried fruit and then treated them to pizza and salad.
Despite my months of preparation, the overnight express company took two days rather than one to deliver the dioxin samples to Canada. That meant that they arrived slightly warmer than testing protocols recommend.
Several government scientists advised me to have the lipids tested first to make sure they were intact, which would cost about $200. If they were, then the overall results would still be valid.
But was it really wise to risk nearly $5,000 on analyzing samples whose integrity might be questioned? I agonized over whether to put the family through the testing again and decided to ask them if they would be willing. Josefina persuaded her children it was worth it.
This time, I triple-checked that the dry ice was in the right place, and we switched to a closer lab in central California. The next day, the manager assured me that the samples had arrived within the prescribed temperature range.
Results: Now What?
Once the results came, all of the government experts who had advised me beforehand did not respond to requests for comment, and those who did gave me off-the-record comments. (Click here for a look at each family member's test results.)
I also spoke with medical doctors, university scientists, and environmental health advocates familiar with heavy metals, dioxins, and biomonitoring. All offered thoughts for the family, and some were willing to be quoted in stories.
They gave a range of opinions on immediate risk. But on long-term risk, there was nearly universal agreement: if the family's levels of several of the substances stayed that high, it spelled potentially serious harm for them in coming years. Some said that Junior's arsenic level, in particular, was cause for potentially immediate concern, and the chromium and mercury levels might be. But additional evaluation would be necessary to know for sure. The family deserved to be fully informed, but not panicked.
I had found an empathetic, terrific doctor to deliver their results. With her help, I prepared detailed charts comparing their levels to those of average Americans and others. The doctor had undergone such testing herself and was able to share with them the anxiety that such findings can bring.
Juggling the timeline of the story while remaining true to what I thought were the family's needs became increasingly difficult. One doctor strongly recommended that state public health officials investigate possible causes of mercury in and around the home. They took weeks to respond and then declined. That doctor and others suggested retesting for the arsenic, mercury and chromium, particularly the arsenic in 17-year-old Junior.
But Junior was not eager to participate in any more testing, particularly since one test would require him to urinate in a large plastic container over a period of 24 hours.
I convinced California Watch editors to spend a bit more money to analyze his arsenic levels. Thankfully, no harmful inorganics were found. But re-analyzing the family's original mercury and chromium samples or taking new samples was beyond California Watch's or my budget. And the Martins were tired of testing.
Was It Worth It?
The story would not have been possible without the testing. The results provide a troubling snapshot of one family's chemical burden and raise questions about whether entire communities of residents near industry may be similarly exposed. Josefina now has concrete information on the potentially harmful metals to which her family has been exposed, which she can discuss with doctors in the future.
But there is unfinished business. I still wonder about the mercury and chromium levels. It bothers me that I could not afford to do comprehensive follow-up testing, that public health regulators were not interested, and that the Martins have extremely limited medical options.
I hope other journalists will do targeted testing in heavily polluted areas. I have tremendous respect for the scientists and doctors who do such testing, along with a far greater understanding of what they go through and why they report their findings so carefully. Although I understand the constraints, I still wish they would ask willing subjects to publicly to discuss how environmentally caused illnesses have affected their lives.
The most amazing part of the project was working with a family that literally let me get under their skin.
Every time I drive past Maywood on the 710 freeway, I think about how smart Adilene is and how she should be in nursing school. I hear Josefina's voice, exhausted one day and relieved the next, or Sal describing his latest battle to clean up the water. I remember Anaiz telling me how the air smelled like burning animals when she went out at night. I see Junior holding his puppy and kissing her.
They are an American family living their lives as best they can in some pretty tough circumstances, while often being ignored by a welter of agencies that are supposed to safeguard them. I'll always be grateful that they let me into their lives. I hope that in some way I helped them.
On a personal note, I'll never look at ham steak the same way, now that I've seen the slaughterhouse and smelled the rendering plants upwind of the Martin family's home. And I run my water for a full five minutes every morning before I make my coffee to get any lead out.
Janet Wilson received reporting grants for her story on the Martin family from the Dennis A. Hunt Fund for Health Journalism in 2009 and 2011. She does media relations for the University of California, Irvine, and is a freelance journalist.
Photo credit: Daniel A. Anderson for California Watch