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National Children's Study may shine a light on health-care disparities

This article first appeared in the St. Louis Beacon, Dec. 31, 2010  - The Beacon's series, called Worlds Apart, has focused on health-care disparities in St. Louis and programs designed to address them. One program that could have a substantial impact, though perhaps years down the road, is the National Children's Study. St. Louis has been chosen as one of 37 locations to participate in the study, which will collect data from children across the country from the womb to age 21.

The newly formed Gateway Study Center is organizing the research here with St. Louis University, Washington University, Southern Illinois University Edwardsville and the Battelle Centers for Public Health Research and Evaluation.

The ambitious study is the first nationally representative womb-to-adult research project of its size and aims to include 100,000 participants, with a thousand from St. Louis. Representatives from the Gateway Center will go door to door to recruit pregnant women in selected areas of the city. Pregnant women are also encouraged to contact the center to see whether they are eligible to participate.

The study will examine how the environment -- air, water, diet and sound -- affects a child's health. It will focus, too, on family dynamics, cultural influences and genetics. The study hopes to shed light on such childhood afflictions as asthma and obesity.

Though the study will take place over decades, results will be released as they become available.

Among many things, they "are expected to provide new understandings of the role of a wide range of substances and experiences and especially how heredity and exposures interact," said Dr. Louise Flick, professor of epidemiology at St. Louis University and principal investigator for the Gateway Center. She said research related to pregnancy and pre-term births will be among the first results to be released.

The Impact of Neighborhoods

The study will also focus on how neighborhoods can affect health outcomes among families.

"I'm most excited about understanding how the community environment -- access to early child programs, the type of schooling children have access to as they grow and develop, access to green spaces, parks -- how all of those things combine to affect children's aspirations, long-term goals and success into late adolescence," said Vetta Sanders Thompson, associate professor at the Washington University George Warren Brown School of Social Work and co-investigator for the Gateway Center.

Whether potential participants will share the researcher's enthusiasm remains to be seen. In many urban areas, medical researchers are viewed with suspicion. Blacks, in particular, believe that researchers have exploited them without returning any benefits. The infamous Tuskegee experiment, conducted between 1932 and 1972, is the most egregious example of that exploitation. Participants in the study were not told they had syphilis and never got treatment for it as researchers studied the progression of the disease.

Then there has been the recent public interest in the story of Henrietta Lacks of Baltimore, whose cancerous cells were used after her death in 1951 in countless labs to study a variety of diseases. Lacks' family was unaware of how her cells were being used.

Aiming For Transparency

The Gateway researchers say their research protocols will adhere to the highest ethical standards, but they know they will encounter those with suspicions.

"I don't think there's a researcher in St. Louis who isn't aware that there is a legacy of mistrust between researchers, especially medical researchers, and parts of the community," Thompson said. "I believe we are being transparent in what we are doing. In addition, we are making an effort not to promise more than the study can deliver to any individual, family or community. We are committed to figuring out how to get information that we have from the study back to the community, not only in a timely manner, but a manner that is useful to the community."

Thompson added that if researchers become aware of any risks to participants, they would share the information. "We will not intervene," she said. "But we will make that risk known to the participant. We're putting together a list of resources for participants to consult in those cases."

Thompson said researchers will provide incentives for women to enroll in the study, but that they will serve more as a "thank you" than an enticement.

"Most people will enroll because they want to do something positive," Thompson said. "They may realize that this will benefit future generations."

Jocelyn Wagman is a recent graduate of Johns Hopkins University's undergraduate public health program and is anticipating joining the Peace Corps next year.