Nav: Home

New in the Hastings Center Report, March-April 2019

April 25, 2019

Federal Right to Try: Where Is It Going?
Kelly Folkers, Carolyn Chapman, and Barbara Redman

Many patients with terminal or serious illness who have exhausted their treatment options want access to experimental therapies they hope will help them. A federal right-to-try law, enacted in May 2018, permits physicians to treat patients with investigational medical products without authorization from the Food and Drug Administration, under specific circumstances. But this right-to-try pathway may have undermined the FDA's role in monitoring the safety and efficacy of drugs, and it might even have created a loophole by which pharmaceutical companies can sell unapproved drugs to the public. Kelly Folkers is a research associate, Carolyn Chapman is a postdoctoral fellow, and Barbara Redman is an associate at the Division of Medical Ethics at the NYU School of Medicine.

Citizen Science and Gamification
Karola V. Kreitmar and David C. Magnus

Citizen science describes the concept of nonprofessional volunteers assisting researchers in collecting data with the goal of contributing to scientific knowledge. Examples include playing games like Foldit and EteRNA to experiment with the shapes of biological materials, which has led to important scientific or medical advancements. But questions remain about how to conceive of these gamers: are they, in effect, scientific researchers? Are they research participants? Or are they simply players? Karola V. Kreitmar and David C. Magnus write that they occupy a position different from existing roles, and new standards and guidelines are needed to address their participation. The authors also propose that gamers be given appropriate credit and compensation for their discoveries. Kreitmar is an assistant professor in the Department of Medical History and Bioethics at the University of Wisconsin-Madison; Magnus is the Thomas A. Raffin professor of medicine and biomedical ethics and a professor of medicine and pediatrics at Stanford University.

At Law: Conscience and Religious Freedom Division Marks Its First Anniversary with Action
Sandra H. Johnson

It's been a year since the Trump administration established the Conscience and Religious Freedom Division within the Department of Health and Human Services' Office of Civil Rights to increase the legal protection of religious and conscience objections in health care. The division "is already having a significant impact," writes Sandra H. Johnson. It "is causing health care entities, including hospitals, research organizations, and clinics, to change policies and practices." She continues: "Administrative agencies also shape the law in what they decide not to pursue. For example, OCR has suspended enforcement of the Affordable Care Act prohibition against gender?identity discrimination." Johnson is a professor emerita of law and health care ethics at the Center for Health Law Studies at Saint Louis University School of Law.

Also in this issue:
-end-
Contact Susan Gilbert, director of communications
The Hastings Center
845-424-4040 x244
gilberts@thehastingscenter.org

The Hastings Center

Related Health Care Articles:

Care management program reduced health care costs in Partners Pioneer ACO
Pesearchers at Partners HealthCare published a study showing that Partners Pioneer ACO not only reduces spending growth, but does this by reducing avoidable hospitalizations for patients with elevated but modifiable risks.
Health care leaders predict patients will lose under President Trump's health care plans
According to a newly released NEJM Catalyst Insights Report, health care executives and industry insiders expect patients -- more than any other stakeholder -- to be the big losers of any comprehensive health care plan from the Trump administration.
The Lancet: The weaponisation of health care: Using people's need for health care as a weapon of war over six years of Syrian conflict
Marking six years since the start of the Syrian conflict (15 March), a study in The Lancet provides new estimates for the number of medical personnel killed: 814 from March 2011 to February 2017.
In the January Health Affairs: Brazil's primary health care expansion
The January issue of Health Affairs includes a study that explores a much-discussed issue in global health: the role of governance in improving health, which is widely recognized as necessary but is difficult to tie to actual outcomes.
Advocacy and community health care models complement research and clinical care
Global lung cancer researchers and patient advocates today emphasized that new models of delivering care and communicating about cancer care play an important role in the fight against lung cancer.
About 1 million Texans gained health care coverage due to Affordable Care Act
Texas has experienced a roughly 6 percentage-point increase in health insurance coverage from the Affordable Care Act, according to new research by experts at Rice University and the Episcopal Health Foundation.
In India, training informal health-care providers improved quality of care
Training informal health-care providers in India improved the quality of health care they offered to patients in rural regions, a new study reports.
Affordable Care Act has improved access to health care, but disparities persist
The Affordable Care Act has substantially decreased the number of uninsured Americans and improved access to health care, though insurance affordability and disparities by geography, race/ethnicity, and income persist.
Integrated team-based care shows potential for improving health care quality, use and costs
Among adults enrolled in an integrated health care system, receipt of primary care at integrated team-based care practices compared with traditional practice management practices was associated with higher rates of some measures of quality of care, lower rates for some measures of acute care utilization, and lower actual payments received by the delivery system, according to a study appearing in the Aug.
Study finds quality of care in VA health care system compares well to other settings
The quality of health care provided to US military veterans in Veterans Affairs (VA) facilities compares favorably with the treatment and services delivered outside the VA.

Related Health Care Reading:

Best Science Podcasts 2019

We have hand picked the best science podcasts for 2019. Sit back and enjoy new science podcasts updated daily from your favorite science news services and scientists.
Now Playing: TED Radio Hour

Digital Manipulation
Technology has reshaped our lives in amazing ways. But at what cost? This hour, TED speakers reveal how what we see, read, believe — even how we vote — can be manipulated by the technology we use. Guests include journalist Carole Cadwalladr, consumer advocate Finn Myrstad, writer and marketing professor Scott Galloway, behavioral designer Nir Eyal, and computer graphics researcher Doug Roble.
Now Playing: Science for the People

#529 Do You Really Want to Find Out Who's Your Daddy?
At least some of you by now have probably spit into a tube and mailed it off to find out who your closest relatives are, where you might be from, and what terrible diseases might await you. But what exactly did you find out? And what did you give away? In this live panel at Awesome Con we bring in science writer Tina Saey to talk about all her DNA testing, and bioethicist Debra Mathews, to determine whether Tina should have done it at all. Related links: What FamilyTreeDNA sharing genetic data with police means for you Crime solvers embraced...