Health Literacy Before Returning Individual Results
Technological advances have altered clinical practice and the way individuals view human research. While these advancements have the potential to be beneficial for the scientific community, individuals and society as a whole, with great benefits, also comes great risks. One risk of returning individual results in research, is psychological trauma to the participant. In this essay, I argue that individual research results should not be returned, until certain conditions are met. Before explaining my position, it is important to distinguish three views, i.e., the opportunity for participants to look at their individual results, participants who will not look at their individual results and clinical sharing of trial data. My focus is the former. After determining whether participants should be able to look at their individual results, the second question is, “do we have an obligation to provide health literacy before returning individual results” (Professor Lynch). My answer is yes. Not only is this a
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As a policy, all institutions and centers within the United States conducting human research should outline a health literacy plan for specific types of research (example: clinical, genomic, social behavioral). A plan for health literacy is not required for exempt research. Additionally, all consent forms will have the same basic information, but each type of research should have a different format, in order for the participant to understand the implications of choosing if they would want to have individual results or incidental findings returned and what that means. Furthermore, if a researcher notices something strange with a participant’s results, the researcher has an obligation to provide that participant with the number of an expert, so their results can be
As a policy, all institutions and centers within the United States conducting human research should outline a health literacy plan for specific types of research (example: clinical, genomic, social behavioral). A plan for health literacy is not required for exempt research. Additionally, all consent forms will have the same basic information, but each type of research should have a different format, in order for the participant to understand the implications of choosing if they would want to have individual results or incidental findings returned and what that means. Furthermore, if a researcher notices something strange with a participant’s results, the researcher has an obligation to provide that participant with the number of an expert, so their results can be