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Compassion and Research in Compassionate Use
David Magnus

In this issue of American Journal of Bioethics, Walker and colleagues (2014) discuss the issue of expanded access programs, or “compassionate use” that makes it possible for patients to get access to unapproved drugs. This is a timely topic for several reasons. First, demand by patients has never been louder. Social media and the free availability of information through the web makes it possib...

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Target Article

Ethical Justifications for Access to Unapproved Medical Interventions: An Argument for (Limited) Patient Obligations
Mary Jean Walker, Wendy A. Rogers & Vikki Entwistle

Many health care systems include programs that allow patients in exceptional circumstances to access medical interventions of as yet unproven benefit. In this article we consider the ethical justifications for—and demands on—these special access programs (SAPs). SAPs have a compassionate basis: They give patients with limited options the opportunity to try interventions that are not yet approv...

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Protecting Posted Genes: Social Networking and the Limits of GINA
Sandra Soo-Jin Lee & Emily Borgelt

The combination of decreased genotyping costs and prolific social media use is fueling a personal genetic testing industry in which consumers purchase and interact with genetic risk information online. Consumers and their genetic risk profiles are protected in some respects by the 2008 federal Genetic Information Nondiscrimination Act (GINA), which forbids the discriminatory use of genetic informa...

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