Brain injury, medical progress, and the disability paradox: Towards an Americans with Abilities Act.

It is helpful to think about the needs of patients with moderate to severe brain injury through the lens of disability law. However, there are limitations to current disability law that contribute to ongoing segregation and marginalization of individuals with severe brain injury. Indeed, one of the paradoxes of American jurisprudence is that more clear constitutional protections accrue to those who have definitively immutable conditions. Thus, as neuroscience brings new therapies to those with brain injury, they may become less protected by the constitutional elements of disability law because their conditions have changed and become mutable. This is the clinical progress that brain injury professionals all seek to achieve, but ironically these advances could potentially degrade the legal protections of patients who benefit from emerging treatments. In this paper, we will critically examine this paradox at the interface of medicine and the law and suggest that the Americans with Disabilities Act (ADA) could be nicely complemented by legislation we have named the Americans with Abilities Act (AWAA). Instead of focusing on disabilities that need protection, the AWAA seeks to sustain and foster newfound abilities made possible by the fruits of medicine and neuroscience.

Subject and Family Perspectives from the Central Thalamic Deep Brain Stimulation Trial for Traumatic Brain Injury: Part II.

This is the second paper in a two-part series describing subject and family perspectives from the CENTURY-S (CENtral Thalamic Deep Brain Stimulation for the Treatment of Traumatic Brain InjURY-Safety) first-in-human invasive neurological device trial to achieve cognitive restoration in moderate to severe traumatic brain injury (msTBI). To participate, subjects were independently assessed to formally establish decision-making capacity to provide voluntary informed consent. Here, we report on post-operative interviews conducted after a successful trial of thalamic stimulation. All five msTBI subjects met a pre-selected primary endpoint of at least a 10% improvement in completion time on Trail-Making-Test Part B, a marker of executive function. We describe narrative responses of subjects and family members, refracted against that success. Interviews following surgery and the stimulation trial revealed the challenge of adaptation to improvements in cognitive function and emotional regulation as well as altered (and restored) relationships and family dynamics. These improvements exposed barriers to social reintegration made relevant by recoveries once thought inconceivable. The study's success sparked concerns about post-trial access to implanted devices, financing of device maintenance, battery replacement, and on-going care. Most subjects and families identified the need for supportive counseling to adapt to the new trajectory of their lives.

Daniel Callahan's Decade of Doubt.

Daniel Callahan died on July 16, 2019, just short of his 89th birthday. In the years since, we have seen the overturning of abortion rights, a concern central to his scholarship and musings about the place of religion in American civic life. Callahan's journey from lay Catholic journalist and commentator at Commonweal to a co-founder of the Hastings Center, during his decade of doubt, is especially relevant today as America revisits established precedent governing a woman's right to choose. His life-long struggle with faith and the secularization of bioethics is a story worth telling, as it may foster dialogue across a divide between religious and laical thinkers that has fractured our political discourse. We recall Callahan's misgivings about the marginalization of religious perspectives in public life; he sought not the denial of complexity nor of difference in views, but rather the importance of free and honest debate around deeply held beliefs, contextualized in the realities of the contemporary world. Callahan's ambivalence about his faith remains a part of the fabric of American life, a story that Callahan chronicled to our collective benefit for over a half-century.

Before The Birth of Bioethics: James M. Gustafson at Yale.

In the 1960s, tucked away at Yale Divinity School, there was a remarkable confluence of bioethics scholars under the tutelage of James M. Gustafson. His students were Jim Childress, Albert R. Jonsen, Tom Beauchamp, LeRoy Walters, Jim Drane, and Stanley Hauerwas, among others. Jonsen later recalled, "That little group was really the beginning of scholarly bioethics." Yet despite Gustafson's influence on the founding generation of bioethics scholars and his prominence as a leading mid-century Christian theologian, his legacy in bioethics is unsecured. This is an unfortunate omission, as Gustafson's contributions to bioethics were not limited to the classroom. In 1969, he brought Paul Ramsey to Yale to deliver the Lyman Beecher Lectures, a collection of talks that would coalesce into Ramsey's The Patient as Person. Gustafson also advised Daniel Callahan as Callahan and Willard Gaylin founded The Hastings Center, on whose founding board of directors Gustafson later served. Through archival research and interviews with Gustafson's former students and colleagues, we recount his biography, consider his pedagogy, and examine the theological pragmatism that informed his engagement with his students and his intellectual commitments before the birth of bioethics. By reviewing Gustafson's contributions to the nascent field of bioethics, we seek to understand why his legacy has been forgotten and to introduce him to a new generation of bioethics scholars.