Opinion | Researchers need more empathy in approaching community health concerns

Washington County has recorded a concerning increase in childhood cancer since the Marcellus Shale fracking projects were approved for the area in 2005. The Pennsylvania Department of Health held a meeting with county citizens on Oct. 7 to explain why this spike of rare cancers was not significant enough to be deemed a cancer cluster and therefore investigated as such.

The meeting at Canon-McMillan High School stands as a fresh example of how the scientific community can sometimes forget the need for empathy and understanding, and this disregard for people’s concerns has sparked outrage and hurt. Instead they were told to drop the issue without any acknowledgment of their anxieties. It is imperative that the research community retains the public’s trust, but dismissing the concerns and hardships of the general populace is not the way to do that.

Part of the reason Washington County citizens are so concerned over this issue is the increased diagnosing of a specific cancer, Ewing sarcoma, in the area. Ewing sarcoma is a very rare bone and soft tissue cancer that develops mostly in children and young adults. Only about 200 Americans are diagnosed with the disease every year, yet 18 cases of Ewing sarcoma have been identified in Washington and Westmoreland counties within the last decade, with two recent diagnoses within the last year.

A $100,000 grant was given to UPMC researchers in late September to study these incidents in response, but the study has been specified to focus on the genetic causes of cancer and has no mention of investigation into environmental causes. The people of Washington County argued at the October meeting that the six reported cases of rare childhood cancers in their county should be considered significant enough for research into the possible influence of fracking, which is common in the area. Needless to say, the dismissal of these cases did not go over well with the public and the meeting was cut short, with health experts from the Health Department and UPMC needing to be escorted out of the building by police.

Most of the recent tension between the public and medical health professionals stems from whether or not the increase of childhood cancer in the area should be considered a significant cluster deserving of more environmental research. Local and state health departments determine whether an area has become a cancer cluster once the rate of cancer has exceeded expectations and indicates that there may be additional contributors to the risk of cancer in the area.

There have been cancer clusters identified all over the United States. For instance, from 1973 to 1986 there was a spike of leukemia in Woburn, Massachusetts, that capped off at 21 diagnosed cases that researchers determined were connected to the quality of drinking water in the area. But it was the people of Woburn who first raised the alarm over the possibility of water pollution contributing to the rise in leukemia. It took them years just to get a lawyer to represent their case and get officials to listen to their concerns. And it turns out they were right.

The average citizen may not be a doctoral scientist with a lab and funding to conduct their own research, but parents tend to notice when their children fall ill under suspicious circumstances. Intuition is not infallible, not by a long shot, but if enough people harbor the same growing concerns then those with the power to appropriately find the answers should invest effort in doing so.

While the Health Department and researchers determined the cases of cancer in the area to be insignificant, the people of Washington County questioned why they only included three of the recent deaths of rare cancer in the analysis instead of the full six reported in the area. In response, officials conceded that there may have been a mistake in the cancer registry that led to a miscalculation in the statistics, but also held firm that another analysis would not guarantee investigation into the influence of fracking on cancer risk in the area.

It would be charitable to interpret this discrepancy as an unintentional mistake that anyone could make, but when such a mistake has the power to divert attention and funding away from a possible cause of cancer, it becomes a mistake that can not be taken lightly. If authorities have been elected to wield such power, every decision must be held to the highest scrutiny of all parties.

Officials should also be more empathetic towards the citizens’ concerns, since the research they organise and fund affects the lives of their patrons in a number of ways. In these types of situations, the people are left in a very vulnerable position. They do not have as much access to scientific information and debate nor can they really help facilitate it outside of electing government officials who may believe in one direction for research over another. 

Dismissing these fears and leaving hundreds of thousands of people who live in these communities in the dark is not an appropriate response and it certainly is not a humane one. Cancer cluster as a term has been dismissed as a buzzword that only serves to fearmonger people, and in 1990 at the National Conference on Clustering of Health Events keynote speaker Kenneth J. Rothman kicked off the conference by expressing his distaste towards disease cluster research. He determined cluster research to be useless to the scientific community — something the incident in Woburn shows is not the case.

These scientists enjoy the benefit of detachment from the tragedy of disease and cancer. What they have deemed useless information to them can be vital and the missing link to a whole community that has been kept on the sidelines, even when the people in the community are the ones who must deal with these diseases.

The events of the Washington County meeting may have been the result of some unfortunate misunderstandings, but the tension between the public and research officials still came to a head because of the dismissal of public concern. Some people only put their trust in research, but no one can trust what they have been denied. They may not be the experts, but the public are not sheep to be led blindly to a conclusion either. The people have demanded answers, and they should be heeded.

Write to Grace at GEM53@pitt.edu.