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Make human research data publicly available, bioethics report says

The recommendation is among 14 points from a presidential commission to help ensure that volunteers in federally funded research are treated ethically.

By Tanya Albert Henry — Posted Jan. 5, 2012

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Patients participating in federally funded scientific studies generally are protected from avoidable harm and unethical treatment. But there is significant room for improvement to increase accountability and, in turn, reduce the chance of volunteers being harmed or treated unethically, a new report says.

In the December 2011 report, the Presidential Commission for the Study of Bioethical Issues called for the improvements. Those include: creating public online access to basic data from human subjects research projects; treating volunteers for research-related injuries and compensating them for harm; and developing courses in bioethics and human subjects research at the undergraduate, graduate and professional levels (link).

President Obama asked for the study after an October 2010 discovery showed that the U.S. Public Health Services ran experiments in Guatemala in the 1940s that exposed people to sexually transmitted diseases.

Commission members said abuses like those in Guatemala were unlikely to happen today. But "the practices of research continue to evolve over time, so it is important to take periodic looks to ensure the rights and welfare of participants are protected," said internist Jeremy Sugarman, MD, MPH, senior adviser to the presidential commission and professor of medicine and bioethics at the Johns Hopkins Berman Institute of Bioethics.

The commission recommended making data public to help improve accountability. "Providing information is a good move toward transparency," Dr. Sugarman said.

The report found that the government helped pay for more than 55,000 trials that involved human research subjects around the world in fiscal 2010. Most involved medical research, although some involved fields such as education and engineering.

The commission discovered that many federal agencies didn't have an easy way to identify basic information about the research they were helping pay for. Also, the government often could not link funding information with study data.

In addition to recommending a public database, the report calls for the government to:

  • Study the effectiveness of protections for human subjects in research.
  • Evaluate the need for a national compensation system or treatment system for research-related injuries and, if needed, study possible programs.
  • Report any changes or reasons for not following the commission's recommendations.

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