Multiple studies have documented major limitations in the informed consent process for the recruitment of clinical research participants. One challenging aspect of this process is successful communication of risks and benefits to potential research participants. This study explored the opinions and attitudes of informed consent experts about conveying risks and benefits to inform the development of a survey about the perspectives of research nurses who are responsible for obtaining informed consent for clinical trials. The major themes identified were strategies for risks and benefits communication, ensuring comprehension, and preparation for the role of the consent administrator. From the experts’ perspective, inadequate education and training of the research staff responsible for informed consent process contribute to deficiencies in the informed consent process and risks and benefits communication. Inconsistencies in experts’ opinions and critique of certain widely used communication practices require further consideration and additional research.
Substantial funding is being allocated to new land protection and access to protected open space for marginalized communities is a crucial concern. Using New England as a study area, we show striking disparities in the distribution of protected open space across multiple dimensions of social marginalization. Using a quartile-based approach within states, we find that communities in the lowest income quartile have just 52% as much nearby protected land as those in the most affluent quartile. Similarly, communities with the highest proportions of people of color have just 47% as much protected land as those in the lowest quartile. These disparities persist across both public and private protected land, within urban, exurban and rural communities, for different sized buffers around communities, and across time. To help address these disparities in future conservation plans, we develop a screening tool to identify and map communities with high social marginalization and low nearby protected open space within each state. We then show that areas prioritized according to these environmental justice criteria are substantially different from areas prioritized according to conventional conservation criteria. This demonstrates how incorporating environmental justice criteria in conservation prioritization processes could shift patterns of future land protection. Our work provides methods that can be used broadly across regions to inform conservation efforts.
Research nurses may have inadequate training to encourage, support, and reinforce communication of risks and benefits during the informed consent process. Relevant purposeful education and training should help to improve and standardize the ethical informed consent process.
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