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Switch to: References
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Halley et al. (2023) highlight important equity challenges emerging out of existing health policy’s reliance on self- and family advocacy. As advocacy capacity varies dramatically across groups, pu... |
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From its inception, genomics has been a speculative endeavor, fixated on a far-off horizon that would deliver on the promise of targeted diagnostics and individualized therapeutics (Fortun 2008). M... |
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Research and clinical trial development for rare diseases pose unique bioethical challenges. Much of the literature on rare diseases focuses on patient advocacy and drug development to manage or cu... |
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Stories of rare disease advocacy can elicit strong but ambivalent responses. It’s moving to read about the heroic efforts of parents “becoming drug developers to find a cure for their children’s ra... |
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In today’s world, Artificial Intelligence plays a central role in many decision-making processes. However, its use can lead to structural and epistemic injustices—especially in the context of healt... |
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Newborn screening (NBS) began in the 1960s by testing all newborns for a single condition—phenylketonuria, or PKU—which, when identified and treated early, significantly reduces morbidity. Over the... |
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The timing of this special issue of AJOB probing whether public engagement (PE)1 might help achieve equity in genomics is no coincidence. While many issues discussed by the authors are not entirely... |
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In their article, “Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care,” Halley et al. (2023) use three case examples to describe challenges patients with rar... |
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Halley and colleagues highlight important aspects of advocacy and justice in rare disease and provide recommendations for stakeholders to encourage progress toward equity and justice. In the rare d... |
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We, in the rare disease community are grateful to Halley et al. (2023) for highlighting some of the long-overlooked barriers to care. As the parent of a non-ambulatory, teenage boy living with Duch... |
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