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The CureTogether website allows participants to log in anonymously to answer questions about diseases or conditions they may have and the various treatments they have used, along with the effectiveness of those treatments.
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Here, a person can purchase a testing kit, submit a saliva sample, and access a secure online report regarding his or her genotype that links results to research about disease risks, carrier risks, physical traits and drug responses. For an additional fee, the customer also can explore his or her ancestry and even link up with other customers whose DNA closely matches theirs.
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Amazon's Mechanical Turk offers investigators the chance to survey thousands of respondents quickly and cheaply via computer while protecting their anonymity. Once IRBs understand how the system works, approval should be a slam dunk, right?
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IRB members and research offices need to add the Guatemalan experiment to their human subjects research training and redouble efforts to educate the public about the high level of ethics and protections in research projects today, experts say.
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The recent shocking disclosure that U.S. public health officials sanctioned a study in Guatemala 64 years ago in which people were deliberately infected with sexually-transmitted diseases (STDs) for research purposes has brought home the message to IRBs that transparency is absolutely critical in human subjects research.
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Researchers go to all sorts of lengths to attract participants for surveys and other types of non-clinical research recruiting Psych 101 students, posting fliers, handing out gift cards, etc. But a new method of recruitment takes advantage of an existing Internet trend toward outsourcing tasks to thousands of computer users around the world.
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One of the strangest new areas of research ethics involves how IRBs should handle research that involves Internet communities, including virtual communities.
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African-American women were more open to learning about breast self-exam and mammography when stories about cancer survivors were included in an informational video, according to a report published in Patient Education and Counseling.
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Some of the "tools" in the Health Literacy Universal Precautions Toolkit may not be the typical forms or handouts that many toolkits provide, but they are effective, says Laura Noonan, MD, director of the Center for Advancing Pediatric Excellence at Carolinas Healthcare System in Charlotte, NC.
