Frequently asked questions

1.  If I volunteer to be in the study, what will I be asked to do?

Participants will be asked to:

  • Complete either an online or paper self-administered questionnaire. This questionnaire will ask about where you have lived and worked over your lifetime, medical history, and lifestyle.
  • Complete follow-up questionnaires approximately every two years to update your contact information, medical and occupational history, and any changes in lifestyle.
  • Some participants may also be asked if they are willing to:
    • Donate a blood, urine, or saliva sample.
    • Visit our research lab at UB South Campus for additional questionnaires and measures.

2.  Is Tonawanda Coke Corporation involved in the study in any way?

Tonawanda Coke Corporation is not involved in this study.  They are not involved in the study design, and have no role in the data collection, analysis, or dissemination of results.  The fines levied against Tonawanda Coke Corporation are funding the health study. 

3.  Who is running the study?

Researchers at the University at Buffalo are running the study.  Dr. Matthew Bonner, associate professor in the University at Buffalo's Department of Epidemiology and Environmental Health, is the principal investigator.  Drs. Richard Browne, Lina Mu, Jim Olson, and Laurene Tumiel Berhalter, also from the  University at Buffalo, are co-investigators.  Information on our full study team is located on our research team page.

4.  Is my information safe?

All data generated from our study will be kept strictly confidential.  Only researchers involved in the study will have access to the data, and your name will not be used.  Your contact information is stored in a separate, locked, location from your study data and only study personnel have access.  The research team will never sell your contact information to anyone.

The Environmental Health Study for Western New York website was built by UB computer science professors, is housed within UB and includes an encrypted connection and an SSL certificate (Secure Sockets Layer; establishes an encyrypted link between the website and the browser).  Your survey data are also protected by a combination of firewalls, encryption, and scanning tools. 

Please see our data safety page for more information.

5.  How do you protect my privacy?

Your privacy is protected in a number of ways.  Results will never be published on individuals; results will only be reported in summary format.  Additionally, you will be assigned an ID number so that you will not be identifiable in the data.

You can also help to ensure your privacy by taking the questionnaire in a private location and/or on a personal mobile device or computer instead of in a public setting or on a public computer.

Please see our data safety page for more information.

6.  What are the limitations of the study?

This study probably will not be able to assess all illnesses that might be caused by environmental pollution because some of these conditions are rare. In addition, reconstructing individual historical exposure levels to common environmental pollutants, such as polycyclic aromatic hydrocarbons and benzene, is an imperfect process and may obscure relationships between exposure and some health outcomes.

7.  How can I find out the results of the study?

Results from the study will be communicated through the study website, published manuscripts, and scientific presentations.  No individual data will be presented; only summary, or aggregate, data will be published. 

8.  Who makes sure this study is safe, ethical, and scientifically rigorous?

The study is under review by several different groups to protect participants.  The University at Buffalo Institutional Review Board (IRB) is responsible for making sure the study is safe for participants, is ethical, and has scientific merit. 

The study design and protocol are also reviewed by an outside Scientific Advisory Committee and three separate Community Advisory Committees for each community of the City and Town of Tonawanda and Grand Island.

In addition, the study also has administrative oversight at the highest university levels, including an Administrative Advisory Committee comprised of Michael E Cain, MD, Dean of the Medical School; Jean Wactawski-Wende, PhD, Dean of the School of Public Health and Health Professions; and Kenneth Tramposch, PhD, Senior Associate Vice President for Research and the Research Foundation Operations Manager.

9.  What exposures are we interested in and why?

The main exposures of interest are coke oven emissions which are made up of many different kinds of chemicals. Two important chemicals in coke oven emissions are benzene and polycyclic aromatic hydrocarbons (PAHs). At high levels, both of these chemicals have been shown to have harmful effects on humans, including disease outcomes such as lung and bladder cancer, and leukemia.  This knowledge is based on occupational studies, made up of mostly male participants. Not much is known about the disease outcomes from these exposures in other populations like women, children, and the elderly, nor is very much known about disease outcomes from very low levels of exposure.

One important thing to know is that just because someone was exposed to these chemicals doesn’t necessarily mean that they will get sick. Part of what this study will look at is differences in exposures between people who get a disease compared to those who do not. The research team will use information from your questionnaire, and any clinical measures taken, to look for genetic, lifestyle, and other factors that may help prevent disease from happening, even in people who were exposed to these chemicals.

10.  What is benzene?

Benzene is a clear, colorless, flammable liquid that is used in many industrial settings. It can be used in inks for printing, manufacturing of organic chemicals, rubber, lubricants, detergents, dyes, pesticides, and it can be used as a gasoline additive. Exposure to benzene comes from many different sources including, pumping gas, work-related exposures, automobile exhaust, air pollution from industrial sources, tobacco smoke, and consuming contaminated food or drink. Benzene is classified as carcinogenic by the International Agency for Research on Cancer (IARC). For more information on benzene please see the IARC monograph or the CDC website.

11.  What are polycyclic aromatic hydrocarbons (PAHs)?

Polycyclic aromatic hydrocarbons (PAHs) are a group of organic compounds that are typically formed during the organic combustion process. There are over 200 different PAHs and seven of them have been classified as carcinogenic by the International Agency for Research on Cancer (IARC).  Exposure to PAHs comes from many different sources including tobacco smoke, fossil fuel combustion, high temperature cooking, eating certain foods, occupational exposures, forest fires, etc. For more information, please see the IARC monograph or the CDC website.

12.  How do chemicals like benzene or PAHs cause disease?

Much like how your body breaks down food after you eat, your body also needs to break down chemicals you breathe in in order to eliminate them from your body. When your body breaks down benzene or PAHs, other chemicals are created that can damage your DNA.  This damage can lead to diseases like cancer in some people. To make things complicated, there are several ways your body can break down PAHs, and everyone’s body may do so slightly differently, depending on your genetics, and exactly how much of the chemical got into your body.

If you are interested in knowing the technical details of benzene or PAH metabolism please contact the research team.

13.  How do we measure if you were exposed to benzene and PAHs from coke oven emission?

An important thing to know about both benzene and PAHs is that they can be present in the environment even without coke oven emissions. Activities such as pumping gas, smoking, or eating grilled vegetables and meats can give you low levels of exposure to these chemicals. Since the actual chemical molecules themselves cannot tell us where they are from, we are unable to determine, for example, if the benzene your body metabolized came from pumping gas or from coke oven emissions.

The good news is that we can try to figure this out.  As epidemiologists, we use different mathematical modeling techniques to estimate exposures from many sources. This is why participating in our study is so important. We have a big ‘exposure’ puzzle to put together and the information you give to us is a piece to the puzzle.

14.  How do we determine how much you were exposed?

Since we know that benzene and PAHs are present in our environment even without coke oven emissions, we cannot simply estimate your exposure based on how close to or how far away from Tonawanda Coke Corporation you live. We need to add more pieces to the puzzle. We call this our ‘exposure assessment strategy’.

Our strategy includes gathering information from many different sources and combining them together to create a complete picture, and it all starts with you. By filling out the information on the questionnaire, we get an idea of the amount of past and present exposure you have in your daily life from everyday sources. If you decide to donate a urine, blood, or saliva sample to the study, we will analyze your samples for metabolites (by-products of your body processing a chemical) and for the genes responsible for metabolizing the chemical to figure out your current exposure and how your body breaks down the chemicals. 

Next, we will combine your personal data with data from US EPA and New York State monitoring stations and environmental studies. We match the areas of where you have lived to environmental monitoring station data, environmental study data, and weather data to determine how much exposure to air pollutants you may have had at each residence.  We can use mathematical models to estimate historical internal-dose exposure by estimating the relationship between current data from air monitors and your current metabolites, and superimposing that relationship onto historical air monitoring data. 

Then we add together all of the exposure levels.

Since many of the diseases and illnesses that may be caused by these chemicals take years to fully develop, it is important that we monitor ongoing exposure and your medical history. This is why our study is so long and why it is so important to stay involved. If we work together we may find ways to prevent disease in your community.

15.  What outcomes or diseases are we interested in studying?

First, we want to understand what diseases are already out there in the community (we call this the ‘disease prevalence’). We will gather this information from our baseline questionnaire. Next, we want to determine what diseases are newly diagnosed in the community since the study started by using follow-up questionnaires (we call this ‘disease incidence’). We are going to be looking for the following:

  • Cancers (specifically lung, bladder, and leukemia)
  • Cardiovascular diseases
  • Respiratory diseases
  • Diabetes
  • Kidney diseases
  • Immunological conditions/allergies
  • Endocrine disorders
  • Hematological toxicity
  • Mental health
  • Reproductive endpoints
  • New emerging disease
  • Intermediate markers of disease or genetic susceptibility, including biomarkers of exposure and effect

16.  Where else can I find more information?

Please see UB’s News Center for additional FAQs and study information.

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