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EDITORIAL

Meaningful Fissures: The Value of Divergent Agendas in Patient Advocacy
Jordan P. Richardson & Richard R. Sharp

Patient advocacy organizations emerged in the 1950s to collectivize patient power and promote patient’s shared interests and rights. Since that time, patient advocacy organizations have grown in number and influence, filling an assortment of roles that include increasing public awareness, providing support to patients and families, building community, and advocating for research. It is their rol...

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Like Autism, Representation Falls on a Spectrum
Nanette Elster & Kayhan Parsi

We live in a representative democracy. We presumably have the franchise to elect who will represent our interests. Moreover, we live in a society with a range of organizations that advocate for certain causes and represent the interests of a variety of stakeholders. The autism “community” is no different. Yet, no monolithic set of interests represents all the members of the autism community. A...

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Using Implementation Science to Enact Specific Ethical Norms: The Case of Code Status Policy
Emily Shearer & David Magnus

In their article, “The ‘Ought-Is Problem:’ An Implementation Science Framework for Translating Ethical Norms into Practice,” Sisk et al. correctly draw a distinction between aspirational norms (“broad claims that are easily agreed upon”–e.g. “Everyone should have their goals of care met at the end of life”)–and specific norms (claims that provide “direct guidance” about sp...

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Clearing Muddy Waters: The Need to Reconceptualize Minor Increase over Minimal Risk in Pediatric Rare Disease Research
Devan M. Duenas, Benjamin S. Wilfond & Liza-Marie Johnson

The regulations dictating acceptable levels of risk in pediatric research were developed to protect pediatric research participants from unnecessary or excessive harms. These special protections were adopted in 1983 by the Department of Health and Human Services (DHHS) as part of what is generally referred to as Subpart D of the Common Rule, and have not undergone any evaluation or substantive rev...

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Patenting Foundational Technologies: Recent Developments in the CRISPR Patent Struggle
Julian Cockbain & Sigrid Sterckx

In a target article in this Journal in 2018, for which we were two of the coauthors, we discussed the problematic nature of the patenting of foundational (bio)technological processes, in particular the CRISPR-Cas9 (CRISPR) gene-editing technique. This note is intended to bring the Journal’s readers up to speed on a couple of important recent developments in the CRISPR patent sphere. In the ca...

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Target Article

Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation
Matthew S. McCoy, Emily Y. Liu, Amy S. F. Lutz & Dominic Sisti

Recent debates within the autism advocacy community have raised difficult questions about who can credibly act as a representative of a particular population and what responsibilities that role entails. We attempt to answer these questions by defending a set of evaluative criteria that can be used to assess the legitimacy of advocacy organizations and other nonelectoral representatives. With these...

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The “Ought-Is” Problem: An Implementation Science Framework for Translating Ethical Norms Into Practice
Bryan A. Sisk, Jessica Mozersky, Alison L. Antes & James M. DuBois

We argue that once a normative claim is developed, there is an imperative to effect changes based on this norm. As such, ethicists should adopt an “implementation mindset” when formulating norms, and collaborate with others who have the expertise needed to implement policies and practices. To guide this translation of norms into practice, we propose a framework that incorporates implementation...

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