June 1, 2005
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What Was It Like Learning About Toxins in Their Homes? As Research Grows Increasingly Personal, Researchers Look for Most Responsible, Effective Means of Delivering Results
(Newton, MA) – Over the next several weeks, many Cape Cod women who took part in Silent Spring Institute’s Cape Cod Breast Cancer and Environment Study will receive follow-up calls asking them about their experiences, as researchers try to better understand their evolving role of gathering – and releasing – scientific data on a uniquely personal level.

Throughout the month, researchers from Brown University and Silent Spring Institute will take the unusual step of calling 40 of the 120 women who took part in the portion of the study that examined household exposure to 89 indoor contaminants found in air and dust samples. These women were given data regarding their personal household exposure levels in November 2004. Now they will be asked to schedule follow-up interviews to discuss how they felt about receiving the study results and whether the information they were given was clear and helpful. Along with results for each home, the women received information about sources of the chemicals in household products.

“It is rare for researchers to report individual results from a study outside a medical context,” said Silent Spring Executive Director Julia Brody, who is also principal investigator for the study. “In the past, researchers have examined data from a much broader perspective, such as the impact of smokestack pollution on a neighboring community. But indoor pollution studies are more personal, because you are looking at data for a particular woman or a particular home. We have to figure out the best and most responsible way to tell the women who take part in our research what we have found, and what it means to them.”

While each individual’s responses will be kept confidential, overall results from the interviews will be compiled into a handbook that can be used as a resource for other scientists who conduct research and deliver results at the individual level. It will also be useful for community groups who conduct research in collaboration with scientist allies. Other examples of recent studies that analyzed data on an individual level are those that reported the “body burden” of toxins found in volunteer subjects and a California study of toxins found in women’s breast milk.

“We’re doing this because we are committed not only to advancing science, but to the health and well being of those who have agreed to take part in our research,” explained Brody. Budget restraints have limited the number of women being included in the current interview process to one-third of those who took part in the study. However, if others wish to provide feedback or have questions about their individual results, they are urged to call the Institute at 617-332-4288.

The interview process is being funded by an ongoing grant from the National Institute of Environmental Health Sciences (NIEHS) to identify sources of exposure to endocrine- disrupting compounds and ways to reduce that exposure.

The Cape Cod Breast Cancer and Environment Study began in 1994 in response to higher breast cancer incidence on Cape Cod. The household study was originally funded by the Massachusetts Department of Public Health. After state breast cancer research funding was eliminated in 2002, Hurricane Voices Breast Cancer Foundation supported the study. Silent Spring Institute is a non-profit research organization dedicated to studying the environment’s effect on women’s health, with an emphasis on breast cancer.