The Sister Study is looking for 50,000 women between the ages of 35 and 74 who have never had breast cancer themselves, but have a sister - living or deceased - who had breast cancer. Researchers want to look at possible genetic and environmental causes of the disease.
"It builds on the idea that from what we know now, while genes are very important, the environment is probably going to be one of the major determinants," said Tony DeLucia, a volunteer recruiter for the Sister Study and professor of surgery at East Tennessee State University. "We know that (sisters) share the same genes, but we also know they share a lot of the same environmental background, and where they differ, that can be part of the research."
The study is sponsored by the National Institute of Environmental Health Sciences. Study leaders are looking to recruit women from all across the United States and Puerto Rico, and are especially interested in recruiting seniors and minorities. As of Friday, 33,461 women had enrolled in the study nationwide, but only 535 of them were from Tennessee.
Recruiters like DeLucia are hoping to see that number increase.
"In Tennessee, we're probably a little reticent to be involved in research," DeLucia said. "(We think), â€˜What's the government doing meddling in my life and trying to measure what's in my house and trying to find out how much I exercise and eat and smoke?' But this is anonymous. You will never be identified. You're doing humanity a service, and you're doing yourself a service, and you're honoring your sibling. It's win-win-win when you look at it."
Kingsport resident Sandy Greene chose to participate in the study as a way to honor her sister, Suzy Faulkner, who was diagnosed with breast cancer in 1997.
"When Suzy had cancer, I just felt so helpless - like there's nothing you can do," Greene said. "You stand by, and you want to help. So this is just kind of a way of being able to give back for her."
A lump the size of a silver dollar forced Faulkner to endure a mastectomy as well as bone marrow transplants and chemotherapy.
"Suzy's bravery was awesome, and through all of it, she kept her unique and contagious sense of humor," Greene said. "Watching Suzy go through a year and a half of surgery, chemotherapy, bone marrow transplants and reconstructive surgery, I was, and still am, continually amazed at the courage and grace she maintained."
Faulkner has now been cancer free for eight years.
Greene recently learned about the Sister Study from Betty DeVinney, president of the local chapter of the Susan G. Komen Breast Cancer Foundation.
"I was eager to participate," Greene said. "The study is very comprehensive and carefully designed. I am confident that by the end of this study, vital information will be uncovered about the effect of environment, genes and lifestyles on the risk for breast cancer."
Participation in the study involves filling out a series of questionnaires that address various health habits, family history and exposure to certain substances. There are also two telephone interviews required, as well as a home visit, in which a female specialist will collect blood samples. The study volunteer will also be asked to submit samples of house dust and toenail clippings.
"They'll want samples of things that they can use for biomarkers of some of these things that you've been exposed to," DeLucia explained. "They want household dirt because household dirt will reflect things that come in from the outdoors like automobile emissions and diesel emissions - things like that."
Toenails, DeLucia said, provide a record of substances an individual may have been exposed to over a period of weeks or months.
The initial enrollment process should take a total of about five hours, spread out over several weeks. No travel is required, and all interviews and appointments will be scheduled at the volunteer's convenience. After enrollment, researchers will follow up with each volunteer annually for 10 years, which will require about 15 to 30 minutes each year.
If you have a sister who has or has had breast cancer, DeLucia said it's important to understand that your information is valuable, even if you don't think you have much to offer.
It often seems, he said, that important scientific research is "done in ivory towers. It's done in research institutions by people wearing white coats, and it's not about community activists and advocates trying to get the word out. But this is really relevant. This is really where the rubber hits the road. This is going to give us information that we can use almost immediately to develop policies and outreach programs, to improve our community-based strategies for dealing with breast cancer."
For more information about the Sister Study www.sisterstudy.org. For Spanish visit www.estudiodehermanas.org. Or call 1-877-4-SISTER (877-474-7837) or 1-866-TTY-4SIS (866-889-4747).