Mid-Atlantic Consortium Newsletter Summer 2013

Community Representatives Reviewing Research

Reverend Charles GoodsThe Rev. Charles Goods volunteers his time looking out for thousands of research participants each year.

Goods, leader of the Christian Temple Baptist Church in Baltimore, has served as a community representative on one of the six institutional review boards (IRBs) at The Johns Hopkins Hospital and the Johns Hopkins University School of Medicine for nearly nine years. The IRBs are charged with reviewing and approving research projects involving human subjects, including studies at the Kennedy Krieger Institute.

“One of my major concerns is informed consent,” Goods says, “making sure forms contain all of the main points participants need to know in a format they can understand.” Consent forms can get so technical that they almost resemble legal documents, he adds.

Most people are willing to participate in research studies once their doctors or the study principal investigators explain the details, Goods says. But after such a briefing, many go home with unanswered questions. Research studies should have a point person available to discuss participant concerns that crop up, he says.

“Overall, I think members of the community have a much better understanding of medical research than they did 10 to 15 years ago,” Goods says. “We’ve come a long way in providing information, and research is seen as something that’s needed.” He noted, however, that “many people are still cautious because of what has happened in the past,” with studies like the Tuskegee syphilis experiment, in which the U.S. Public Health Service followed hundreds of men in Alabama with syphilis for years without treating them for it or informing them that they had the disease.

Goods himself grew up skeptical of medical research, but says he has since done a 180-degree turn. He has volunteered for two medical studies, and his wife and daughter also have participated in research efforts.

While most participants understand the value of medical research, they may not be aware of all of the different safeguards to protect them, Goods says. Scientific institutions could do a better job educating the community through advertising campaigns and other means that explain the research process as a whole, rather than just recruiting for specific studies, he says. “Johns Hopkins is doing a great job right now through the work of their community health organizations,” Goods says. “More programs of that nature need to be done.”

 

For more information about the Johns Hopkins IRBs, see http://www.hopkinsmedicine.org/institutional_review_board

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