Researchers and governments need to better support communities that are involved in disease studies, writes Ignacio Muñoz-Sanjuan from the CHDI Foundation and Factor H at Nature News.
Before the human genome sequence was available, much of Huntington's disease research was enabled by families in Venezuela affected by the disease, Muñoz-Sanjuan says. But, he notes that that community isn't benefitting from research. "Because of inaction by local governments, they largely lack access to genetic diagnosis and counseling, and have inadequate medical care and scant legal protection," he writes, adding that many people there also now distrust researchers.
Muñoz-Sanjuan argues that researchers and research institutions have a responsibility toward the populations they study. At the very least, he says they need to ensure that research participants have access to diagnostic, preventive, or therapeutic products that are developed from their contributions, as the Council for International Organizations of Medical Sciences and the World Health Organization have suggested.
He says that what angers the Huntington's disease families the most is that they don't have access to the genetic test that would tell them whether they or their children will come down with the disease.
"Here, all scientists can help," Muñoz-Sanjuan says. "The biomedical community can lobby and pressure national governments to include Huntington's disease in legislation on rare disorders, which guarantees access to tests and treatments, and then enforce these regulations."