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Cancer susceptibility testing is likely to become routine in medical practice, despite many limitations and unanswered questions. These uncertainties greatly complicate the process of informed consent, creating an excellent opportunity to reconsider exactly how it should be conducted. Research with women's reactions to the availability of genetic susceptibility testing for breast cancer dramatically underscores that informed consent ought to be highly individualized, taking care to discern what patients believe about the disease and its causes and what role they want their physician to play. [ABSTRACT FROM AUTHOR]

Biomedical science is usually framed for the public in terms of its "promise." When a breakthrough results from scientific inquiry, that promise is translated into a hope for a cure. The "promise" of such advances in biomedical research can have a paradoxical effect. In the case of pediatric neuromuscular disease, rather than reducing suffering, the expectation of cure can be a burden-both physically and emotionally-for affected children and their families. If a family expects a cure, it is likely to do everything possible to help the child live as long as possible, in the hope that the child will eventually receive it. I am not arguing that the appropriate response to the paradox of promise is to impede scientific progress. What is needed, however, is a broader conception of hope-one that values hope for a good day, a good quality of life, good relationships, or even a good death-alongside the hope for a cure., (© 2019 The Hastings Center.)

It is simple enough to claim that academic research institutions ought to be trustworthy. Building the culture and taking the steps necessary to earn and preserve institutional trust are, however, complex processes. The experience motivating this special report--a request for the Center for Talented Youth at Johns Hopkins University to collaborate on research regarding the genetics of intelligence--illustrates how ensuring institutional trustworthiness can be in tension with a commitment to fostering research. In this essay, we explore the historical context for biomedical research institutions like Johns Hopkins that have worked to build local community trust. In so doing, we consider how the example under focus in this special report can lead to greater consideration of how research institutions balance fostering trust with their other commitments., (© 2015 The Hastings Center.)