What Would You Do? Cost and Ethic Concerns in National Children's Health Study

If a stranger knocked on your door and politely asked if they could collect your toenail clippings, body fluids and dust from your sheets for the sake of science, what would you say?

The National Children’s Study is doing just that. Its goal is to enroll 100,000 pregnant women across the country, then monitor them and their babies from before they are born until they turn 21.

The study involves collecting copious amounts of extremely detailed information in hopes of connecting patterns between environment (natural and man-made); biological, chemical, and social factors, physical surroundings, behavioral development, genetics, cultural and familial influences and geographic locations to see how they interact to effect a child’s health.

As you can imagine, the magnitude of the study has been compared to that of a lunar landing but critics are crying foul on the escalating cost of the study as well as ethical issues surrounding its structure.

Part of the cost escalation comes from enrollment issues. Instead of receiving a “yes” from roughly one in fourteen potential participants as initially predicted, the reality is one in forty. Let’s be honest. Twenty-one years is a long time and the quantity of information gathered during visits is burdensome and prohibitive. Many do not want to be bothered.

Racial and cultural issues slow enrollment as well. Study locations are chosen based on having diverse populations with a high number of births. The melting pot that makes our country great also makes recruiting in urban areas more difficult. A wide variety of languages and cultures are encountered, requiring translation services to communicate with potential study participants. With good reason, non-English speakers are suspicious of random strangers knocking on their doors and are tentative at best opening them.

Economics also effect enrollment. It is easier to draft participants in cash rich areas. Movie theatre ads and obstetricians reach potential patients. For a study to be comprehensive and inclusive though, you cannot exclude women unable to afford life’s little luxuries or prenatal care. Reaching these populations takes more time and finesse, and thus, money.

Ethics in information access are another criticism in the structure of the study. Protocol restricts study employees from urging participants to change their health habits. Is it right to make the effort to reach specific populations and not take time to educate them?

How much information should the study provide to participants and their communities? If a genetic mutation is discovered that may or may not appear, and holds no cure, should the participant be notified? Is it worth the worry (perhaps unnecessary) it could cause? If an environmental trigger is suspected to cause a medical condition within a community, should it be reported? The study provides an opportunity to help people and communities but how do you do it without skewing study data?

This is a lot to consider over the course of twenty-one years. If not on target from the start, a lot of time, energy and money will be wasted. For the time being, those heading up the study are taking the criticism seriously. At the moment, most of the study is currently on hold while the scientific community considers these issues.

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The National Children’s Study will examine the effects of environmental influences on the health and development of 100,000 children across the United States, following them from before birth until age 21. The goal of the Study is to improve the health and well-being of children.

For more information, visit their website: www.nationalchildrensstudy.gov

I Say Medicine, You Say Midewin

Think about the word, “medicine.” What does it mean to you? Do you think of multicolored pills? Your doctor? The pharmacy down the street?

If you are an American Indian from the Ojibwe tribe, the word for medicine is “midewin” (pronounced ma-DAY-win) and it means ‘from the Earth.’ It’s subtle, but the difference is clearly there. For American Indians, wellness does not come from a pill. Healing comes from plants and herbs that treat disease. Not viewed as a physical response with a cause rooted in the laws of science, disease encompasses a patient’s spirit, family, community and environment.

Dr. Doreen Wiese, who is of the Ojibwe tribe, is trying to revive the Ojibwe language precisely because of this difference. In the United States especially, native languages have withered up and died for two main reasons: first, because parents felt their children needed to learn English to become successful in American culture and second because until the 1940's, Native American children taken from their homes were forced to only speak English.

A PhD from Northern Illinois University who studies oral history and the ways in which learning is passed through generations, Dr. Wiese believes, “…language is the thread that keeps culture together. Language is woven into our brains and psyches and memories.”

It’s true. Language reflects culture. While the words can be translated into English, the meaning behind the words may change. An Ojibwean story about “midewin” takes on a new meaning when the word becomes “medicine.”

Dr. Wiese’s goal is to write down the Ojibwe language so it can be taught to others. Not an easy task. Part of her impetus in doing so came when she attended a religious ceremony where a speaker claimed God gives everyone a native language. “He said that if you can’t pray in your native language, the Creator cannot hear you. I wanted to learn how to pray in Ojibwe. I wanted to learn how to tell our stories in Ojibwe. That’s the only way we can be whole again as a native people.”