We compared engagement before, during and after the campaign. We placed 25 Facebook advertisements and analyzed their performance in terms of reach and cost across 3 engagement types: passive, active and interactive. We conducted a low-budget (bioethics scholars, who have written on these issues, discussed the reasons for consent, the range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. ![]() The National Institutes of Health (NIH) Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. Researchers need to balance the provision of information for potential subjects to make informed decisions about study participation, with respect for individuals' time to read and interpret study materials.Äifferent types of consent are used to obtain human biospecimens for future research. In conclusion, an engaged community advisory group can provide a sounding board to study investigators for many study issues and can provide guidance for broader communication activities. Focus group discussions with eligible residents who elected not to participate in PMRP revealed that many knew very little about the project, but thought that too much information had been provided, leading them to believe that it would take too long for them to understand and enroll in the study. Most focus group participants were concerned about the confidentiality of both their medical and genetic data. Ongoing communication with study subjects, who consent on the condition that personal genetic results will not be disclosed, takes place through a newsletter that is distributed twice yearly, community talks and media coverage. ![]() A Community Advisory Group, with 19 members reflecting the demographics of the eligible community, was formed and meets twice yearly to provide advice and feedback to the PMRP Principal Investigator and the local IRB. ![]() A series of focus group discussions was held in the year preceding initial recruitment efforts with potentially eligible community residents and slightly less than a year after initial recruitment with eligible residents who had declined participation in PMRP. The purpose of this article is to describe community consultation and communication efforts for the Personalized Medicine Research Project (PMRP), a population-based biobank.
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