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In this article, we report on an effort to study the development and usefulness of a large, broad-use, opt-in biorepository for genomic research, focusing on three ethical issues: providing appropriate understanding, recruiting in ways that do not comprise autonomous decisions, and assessing...
Obtaining effective informed consent from research participants is a prerequisite to the conduct of an ethically sound research. Yet it is believed that obtaining quality informed consent is generally difficult in settings with low socioeconomic status. This is so because of the alleged undue...
Community bioethics dialogues were held on the topic of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER). Participants were 65 and older and represented either a lower income, African American group (A) or a higher income White group (B). Participants were...
The Community Research Fellows Training (CRFT) Program promotes the role of underserved populations in research by enhancing the capacity for community-based participatory research (CBPR). CRFT consists of 12 didactic training sessions and 3 experiential workshops intended to train community...
U.S. regulations governing pediatric research do not specify the assent process. To identify best practices, it is important to examine parents’ and adolescents’ views. The present study focuses on parents’ and adolescents’ views regarding possible research risks and the influence of...
The clinical research landscape has changed dramatically in recent years in terms of both volume and complexity. This poses new challenges for Institutional Review Boards’ (IRBs) review efficiency and quality, especially at large academic medical centers. This article discusses the technical...
Research data repositories (RDRs) are data storage entities where data can be submitted, stored, and subsequently accessed for purposes beyond the original intent. There is little information relating to non-biological RDRs, nor considerations regarding pediatric data storage and re-use. We...
Few studies or investigators involved in community-engaged research or community-based participatory research have examined awareness and adoption of federal regulatory mechanisms. We conducted a survey of investigators affiliated with the 10 National Institutes of Health (NIH) Centers for...
Phase I testing of investigational drugs relies on healthy volunteers as research participants. Many U.S. healthy volunteers enroll repeatedly in clinical trials for the financial compensation. Serial participants are incentivized to ignore restrictions on their participation, and no centralized...
Little is known about public perspectives of scientific and therapeutic uses of placentas. Gaps in knowledge potentiate ethical and clinical problems regarding collection and applications. As such, this study sought to assess the perspectives of placenta donation of a sample of women. Postpartum...
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