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The goals of palliative and end-of-life research are unimpeachable discovering methods to ease the suffering of dying patients and their families.
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Many people willing to participate in clinical research trials never do because they simply dont know about them or misunderstand the obligations involved, says a leading expert on supporting public research participation.
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When an IRB reviews a proposal to pay research participants, members often have little more guidance to go on than their own gut feeling of what is appropriate and what is too much.
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Last year, South Korean researcherWoo Suk Hwang and colleagues at Seoul National University stunned the world with news first published in Science on-line that they had developed stem cells from a cloned human embryo, using somatic-cell nuclear transfer.
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The new public outreach campaign by the OHRP is a much-needed step in the right direction, say many clinical researchers. But the campaigns centerpiece an educational pamphlet designed to answer basic questions about research participation is leaving nonclinical researchers feeling left out in the cold.
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The largest study yet of public fears about genetic discrimination found that 40% of people undergoing testing for a particular genetic disease were concerned that their participation could affect future access to insurance.
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Recent revelations that hundreds of HIV-positive foster children may have been signed up for clinical trials without advocates assigned to ensure their safety have stirred the latest controversy regarding pediatric clinical research.
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In late September, OHRP issued guidance concerning IRB review of clinical trial web sites. The guidance, which can be viewed at OHRPs web site, states that IRB review is required when information on a clinical trial web site includes more information than the study title, the purpose of the study, the protocol summary, basic eligibility criteria, study site locations, and how to get more information on the study.
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Are investigators morally obligated to provide research participants with the chance to see the results from the studies in which they enroll and should IRBs require them to do so?
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One unexpected result from Hurricane Katrina has been a sharp increase in proposals for social-behavioral studies, as social scientists seek to find out how Katrina survivors and evacuees have responded to the disaster.