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05:00 EDT 22nd March 2019 | BioPortfolio

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Showing PubMed Articles 1–25 of 149 from The Hastings Center report

Unexpected Creatures: Procreative Liberty and the Frankenstein Ballet.

One of the most recent and original adaptations of Mary Wollstonecraft (Godwin) Shelley's Frankenstein; or, The Modern Prometheus (1818) is the ballet version choreographed by Liam Scarlett and performed by the Royal Ballet in 2016 and the San Francisco Ballet in 2017 and 2018. What emerges from this translation is an economical, emotionally wrenching, and visually elegant drama of family tragedy from which we can draw a cautionary tale about contemporary bioethical dilemmas in family making that new and fo...

Who Are You?

At a time when our views on practically everything are polarized, there's one thing that growing numbers of us agree on: we want genetic information about ourselves. About 15 million people have taken a direct-to-consumer genetic test, up from 4 million two years ago. Millions more are likely to give these tests as holiday gifts. Many people consider genetic findings deeply meaningful to their understanding of who they are. This information is a gift, but it is also a weight-a paradox that was the theme of ...

Difficulties with Applying a Strong Social Value Requirement to Clinical Research.

In an insightful article published in this issue of the Hastings Center Report, Danielle Wenner criticizes what she describes as transactional approaches to the social value requirement in clinical research and defends a "basic structure approach." Transactional approaches understand social value obligations as arising from transactions (or relationships) between research subjects, investigators, sponsors, and other parties. The basic structure approach, by contrast, understands social value obligations as ...

Who Deserves Access to Care in Children's Hospitals?

An eighteen-year-old with sickle cell disease was admitted to the pediatric hematology service at his local children's hospital for management of an acute pain crisis, one of many such admissions. He had a good relationship with his primary hematologist and primary nurse, but with other health care providers, there was evident friction. Sometimes, he was simply rude, rolling over and pretending to sleep in response to questions about his symptoms. When frustrated or convinced that his pain was not being add...

Wrestling with the Monster: Frankenstein and Organ Transplantation.

In December 1967, Louis Washkansky, a grocer living in South Africa, became the first person to awaken after a heart transplant. Some accounts say that his first words were, "I am the new Frankenstein." Others claim that Christiaan Barnard, his transplant surgeon, uttered these. Much as people have long mixed up who Frankenstein is-creature or creator?-in Mary Shelley's novel, so patient and surgeon, repaired and repairer, are confused in retellings of this post-op Frankensteinian moment. Whether Washkansky...

Locating the Source(s) of the Social Value Requirement(s).

In this issue of the Hastings Center Report, Danielle Wenner looks at a few prominent analyses of the social value requirement for clinical research, claiming that they are all based on what she calls a transactional model of research ethics. She argues that the transactional model fails to provide a secure foundation for the social value requirement, and then, appealing to John Rawls, she argues that a more secure foundation lies in the principles of social justice. Wenner's attempt to locate the source of...

Work Requirements That Don't Work.

Early in 2018, the Trump administration's Centers for Medicare and Medicaid Services issued a guidance letter outlining a new and controversial kind of Medicaid waiver proposal. The administration invited states to propose waivers that would impose work (or other "community engagement") requirements as a condition of eligibility for Medicaid. The Trump administration and state proponents of work requirements want to force able-bodied Medicaid beneficiaries into the workplace. Critics allege that this is bec...

Contributors.

On Cute Monkeys and Repulsive Monsters.

When I heard that a laboratory in China had cloned two long-tailed macaques, I thought of Mary Shelley's novel Frankenstein. When academics write about the novel, many point out that the reason the creature becomes a "monster" is not that he has any inherently evil qualities but that Victor Frankenstein, the creature's "mother," immediately rejects him. All later problems can be traced to the fact that Frankenstein does not take responsibility for his creation. While I do not disagree with this, we need to ...

The Social Value Requirement in Research: From the Transactional to the Basic Structure Model of Stakeholder Obligations.

The history of research ethics includes ethical norms that do not neatly fit into a rubric of "human subjects protections" but that are nevertheless seen as fundamental ethical dictates. Among these norms is the so-called social value requirement for clinical research. Recently, however, the ethical foundation for the social value requirement has come under criticism. I seek to clarify the terms of this foundational debate. I contend that much of this discussion-both critiques of the social value requiremen...

Research Information for Reasonable People.

In 2017, federal officials issued a revised version of the Common Rule, the federal regulations that govern much of the human subject research conducted in the United States. Two provisions on information disclosure have reportedly provoked confusion among researchers and people responsible for research oversight. These provisions incorporate the familiar and foundational legal concept known as the reasonable person standard, applying this to research disclosure. Although other, long-standing Common Rule pr...

2018 Manuscript Reviewers.

Medical Aid in Dying: Bioethics as Sideshow.

Twenty years ago, the passage of the Oregon Death with Dignity Act prompted vigorous debate in my bioethics classrooms; now, the issue barely generates a ripple. Instead, we focus on an issue my students' generation will confront, as illustrated by an amendment to the ODDA introduced in the last Oregon legislative session that would have effectively rescinded two core procedural safeguards: patient decision-making capacity when requesting life-ending medication and self-administration of the medication. Pat...

Rereading Frankenstein: What If Victor Frankenstein Had Actually Been Evil?

As we reread Mary Shelley's Frankenstein at two hundred years, it is evident that Victor Frankenstein is both a mad scientist (fevered, obsessive) and a bad scientist (secretive, hubristic, irresponsible). He's also not a very nice person. He's a narcissist, a liar, and a bad "parent." But he is not genuinely evil. And yet when we reimagine him as evil-as an evil scientist and as an evil person-we can learn some important lessons about science and technology, our contemporary society, and ourselves.

Of Monsters and Men.

The November-December 2018 issue of the Hastings Center Report celebrates two anniversaries. In a supplement to the issue, the fifty-year-old debate about what "dead" means-a debate launched in 1968 by the publication of the Harvard report on brain death-is dissected and reinvigorated in a set of essays assembled by Robert Truog, of Harvard Medical School's Center for Bioethics, and The Hastings Center's Nancy Berlinger, Rachel Zacharias, and Mildred Solomon. Inside the regular issue, a set of essays celebr...

Poverty: Not a Justification for Banning Physician-Assisted Death.

Many critics of the legalization of physician-assisted death oppose it in part because they fear it will further disadvantage those who are already economically disadvantaged. This argument points to a serious problem of how economic considerations can influence medical decisions, but in the context of PAD, the concern is not borne out. We will provide empirical evidence suggesting that concerns about money influence medical decisions throughout the full course of illness, but at the end of life, financial ...

About the Special Report.

The Dead Donor Rule as Policy Indoctrination.

Since the 1960s, organ procurement policies have relied on the boundary of death-advertised as though it were a factual, value-free, and unobjectionable event-to foster organ donation while minimizing controversy. Death determination, however, involves both discoveries of facts and events and decisions about their meaning (whether the facts and events are relevant to establish a vital status), the latter being subjected to legitimate disagreements requiring deliberation. By revisiting the historical origin ...

Revisiting Death: Implicit Bias and the Case of Jahi McMath.

For nearly five years, bioethicists and neurologists debated whether Jahi McMath, an African American teenager, was alive or dead. While Jahi's condition provides a compelling study for analyzing brain death, circumscribing her life status to a question of brain death fails to acknowledge and respond to a chronic, if uncomfortable, bioethics problem in American health care-namely, racial bias and unequal treatment, both real and perceived. Bioethicists should examine the underlying, arguably broader social ...

Beecher Dépassé: Fifty Years of Determining Death, Legally.

Five decades ago, Henry Knowles Beecher, a renowned professor of research anesthesiology, sought to solve a problem created by modern medicine. The solution proposed by Beecher and his colleagues on the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death proved very influential.1 Indeed, other contemporaneous medical developments magnified its significance yet also made the solution it offered somewhat problematic. As we mark this fiftieth anniversary, at a time when conc...

Respecting Choice in Definitions of Death.

The definition of death was clearer one hundred years ago than it is today. People were declared dead if diagnosed with permanent cessation of both cardio-circulatory function and respiratory function. But the definition has been muddled by the development of new technologies and interventions-first by cardiopulmonary resuscitation and ventilators, which were introduced in the mid-twentieth century, and now by extracorporeal membrane oxygenation, which creates the ability to keep oxygenated blood circulatin...

DCDD Donors Are Not Dead.

According to international scientific medical consensus, death is a biological, unidirectional, ontological state of an organism, the event that separates the process of dying from the process of disintegration. Death is not merely a social contrivance or a normative concept; it is a scientific reality. Using this paradigm, the international consensus is that, regardless of context, death is operationally defined as "the permanent loss of the capacity for consciousness and all brainstem function. This may r...

A Defense of the Dead Donor Rule.

Discussion of the "dead donor rule" is challenging because it implicates views about a wide range of issues, including whether and when patients are appropriately declared dead, the validity of the doctrine of double effect, and the moral difference between or equivalence of active euthanasia and withdrawal of life-sustaining treatment. The DDR will be defined here as the prohibition against removal of organs necessary for the life of the patient-that is, the prohibition of intentionally ending the life of ...

The Case of Jahi McMath: A Neurologist's View.

From the start, I followed the case of Jahi McMath with great interest. In December 2013, she clearly fulfilled the diagnostic criteria for brain death. As a neurologist with a special interest in chronic brain death, I was not surprised that, after she was flown to New Jersey, where she became statutorily resurrected and was treated as a comatose patient, Jahi's condition quickly improved. In 2014, her family reported that she sometimes responded to simple motor commands. I shared the general skepticism re...

A Path Not Taken: Beecher, Brain Death, and the Aims of Medicine.

It has been fifty years since a report by an ad hoc committee of Harvard Medical School ushered in the widespread adoption of brain death as a definition of death. Yet brain death remains disputed as an acceptable definition within bioethics. The continuous debate among bioethicists has had three key recurring features: first and foremost, argument over alleged flaws in the conceptual logic and consistency of the "whole-brain" approach as a description of the meaning of death; second, efforts to fix perceiv...


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