Why are you being asked to be in this research study?
You are being asked to be in this study because you live in Barnstable County and own a residence served by a private well.
What is the reason for doing this research study?
This study is designed to test for per- and polyfluoroalkyl substances (PFASs) in private drinking water wells throughout Cape Cod. Our overall goals are to improve the understanding of the extent of PFAS exposure through private well water on Cape Cod, to identify potential sources, and to support private well testing and treatment to reduce PFAS exposure.
PFASs, also known as PFCs or highly fluorinated chemicals, are water-, heat-, and oil-resistant chemicals found in a wide range of consumer products such as stain-resistant carpets and upholstery, waterproof apparel, floor waxes, nonstick cookware, greaseproof food packaging, and even dental floss. People can be exposed to these chemicals from direct contact with products, or through the air they breathe and the food they eat. There have also been instances nationwide of drinking water supplies becoming contaminated with PFASs from industrial sources and fire training facilities. On Cape Cod, PFASs have been found in some public and private drinking water wells.
What will be done during this research study?
If you are interested in participating, we will ask you to complete this online consent form and questionnaire about your well. If you prefer, we can send you a paper copy of this consent form and questionnaire by mail instead. The questionnaire will ask questions such as your well’s age, depth, and any known water contamination issues. Completing this consent form and the questionnaire will take about 30 minutes.
Based on the responses, we will select 50 wells for PFAS testing during each year of the project study. If your well is among the wells selected, we will contact you to set up a time to come to your home to collect water samples. Well water samples will be collected by trained researchers from Silent Spring Institute and the University of Rhode Island. Your well water samples will be tested for PFASs and some common water pollutants in Dr. Elsie Sunderland's laboratory at Harvard University. If your well is selected, we estimate it will take about two and a half hours to schedule and conduct a home visit when members of our team will come to your home to collect water samples from your well.
We want to test untreated water samples from your well. If you treat the water that comes from your well (for instance, with activated carbon), we will want to collect water samples prior to that treatment. By testing untreated water, we will get a better idea about how factors near your well affect water quality. It will be important to remember that chemical levels in your drinking water may be lower if you have installed treatment. We estimate that we will be at your home for an hour to collect the water samples.
If you are not selected to participate in a given year, we will keep your questionnaire on file because we may be able to include your well later in the project. The STEEP Center is a five-year study and ends in 2022.
How will my results be kept confidential?
All information that could identify your participation in the study and water testing results for your well will remain confidential to the full extent of the law. The samples from your well will be identified with a number rather than your name when they are sent to the laboratory for testing. Any physical record that includes your name, address or personal identifying information will be kept in locked file cabinets and electronic files will be stored on a hard drive in a secure location. Access to these records will be restricted to researchers involved in this study.
How will my data be used?
Data from your well and other private wells that we test on Cape Cod will be used to identify areas on Cape Cod where PFAS contamination is affecting private well water quality and where other private wells may also be affected. Your data will also be used to develop chemical "fingerprints" of various PFAS sources.
How will the findings be reported?
We will provide you with the results of the water sampling in your home, if you would like to receive them. We will also provide you with a summary of our overall study findings and information about the chemicals we analyze.
A summary of the findings for all the homes in the study will be reported to Cape Cod residents in public meetings and news media. The research results will also be published in scientific journals. Your name, address and other identifying information will never be used in any reports, publications, or public meetings, and will not be shared beyond the members of our study team.
What will I be able to learn from the results from my own well?
If you decide to receive the results for your own well, you will know what chemicals we detected and how the levels in your well compare with other private wells in our study and with public wells that have previously been tested on Cape Cod. This information will provide an indication of the extent of impacts of PFASs in private wells on Cape Cod. The U.S. EPA has issued health advisory levels for two PFASs in drinking water, so you can learn whether the levels of these two chemicals are above the EPA advisory levels.
Who is doing this study?
Researchers from the University of Rhode Island, Silent Spring Institute, and Harvard University are doing the study. This five-year study is funded by a grant from the National Institute of Environmental Health Sciences (NIEHS) Superfund Research Program. Our project is referred to as the STEEP Center - Sources, Transport, Exposure and Effects of PFASs.
Your well water samples will be tested for PFASs and some common water pollutants at Harvard University. All personal information that could identify you will be removed before the water samples are sent to the lab for testing.
What are the possible risks of being in this research study?
Sometimes, people find results for their home worrisome, so you may want to consider this possibility when you decide whether to receive your individual well results.
There are no foreseeable legal implications of participating in this study if you choose not to receive the study's results for your own home. If you choose to receive the results of the chemical testing of your well, you should be aware of potential legal implications. When you are selling your home, there is no legal obligation for you to voluntarily disclose the results of chemical testing of your well water to potential buyers. However, in the unlikely event that you are asked about environmental hazards or specific chemicals, you are legally obligated to answer honestly. Furthermore, if you buy and sell homes for business purposes, rent out any residential property besides one or two units in your home, or are otherwise engaged in the real estate business, you may be subject to additional disclosure requirements.
This research presents risk of loss of confidentiality, although we will take reasonable steps to protect your privacy and the confidentiality of your study data.
What are the possible benefits to you?
Learning results for your own well may be useful in deciding whether to filter the water that you use for drinking and cooking. Your results are not likely to shed light on any specific health problems for you or others in your home, because the relationships between chemicals and health are complicated and many are not yet well understood.
What are the possible benefits to other people?
The benefit to people on Cape Cod and elsewhere is greater knowledge about patterns of groundwater contamination and factors that might help predict which wells are most vulnerable.
What will being in this research study cost you?
There is no cost to you to be in this research study.
Will you be compensated for being in this research study?
You will not be compensated for being in this research study.
What should you do if you have a problem during this research study?
Your welfare is the major concern of every member of the research team. If you have a problem as a direct result of being in this study, you should immediately contact one of the people listed at the beginning of this consent form.
How will information about you be protected?
The data will be stored in a locked cabinet in the investigator's office and will only be seen by the research team during the study and for 5 years after the study is complete.
The data will be stored electronically through a secure server and will only be seen by the research team during the study and for 5 years after the study is complete.
The only people who will have access to your research records are the study personnel, the Institutional Review Board (IRB), and any other person, agency, or sponsor as required by law. The information from this study may be published in scientific journals or presented at scientific meetings but the data will be reported as group or summarized data and your identity will be kept strictly confidential.
What are your rights as a research subject?
You may ask any questions concerning this research and have those questions answered before agreeing to participate in or during the study.
For study related questions, please contact the investigators listed at the beginning of this form.
For questions concerning your rights or complaints about the research, contact the Institutional Review Board (IRB) or Vice President for Research and Economic Development:
- IRB: (401) 874-4328 / researchintegrity@etal.uri.edu.
- Vice President for Research and Economic Development: at (401) 874-4576
What will happen if you decide not to be in this research study or decide to stop participating once you start?
You can decide not to be in this research study, or you can stop being in this research study ("withdraw") at any time before, during, or after the research begins for any reason. Deciding not to be in this research study or deciding to withdraw will not affect your relationship with the investigators or with the University of Rhode Island, Silent Spring Institute, or Harvard University.
You will not lose any benefits to which you are entitled.
