Society or population, social diversity. Flat cartoon vector illustration.

European Skew in Genetic Research Databases Won’t Abate Without More Concerted Effort

By Robert I. Field, Anthony W. Orlando and Arnold J. Rosoff

The “pangenome” project that is mapping the genetic sequences of 47 diverse human beings from around the world is a much-needed step forward for science and humanity. The lack of racial diversity in genetic databases used in research has been noted for some time, and it has raised growing concerns about the development of clinical applications based on research results. The pangenome does not eliminate these concerns, but it calls greater attention to the significant racial underrepresentation that remains in most databases currently used in research.

For genomic medicine to have widespread effectiveness, it is important that it be based on the study of a diverse pool of subjects. This is especially true in the development of “precision medicine,” in which therapies are tailored to a patient’s genetic characteristics. If a patient’s genetic traits are not represented in a database that was used for the research that led to a treatment, that treatment may be less effective or even risky for them.

Black Americans, as well as members of other racial and ethnic minorities, are most commonly underrepresented in medical research, yet they are the ones most vulnerable to the effects of such underrepresentation. This can create yet another instance of racial disadvantage in health care. However, a recent study of genetic researchers found that investigators tend to give only limited consideration to demographic diversity when selecting a database to use, with more attention paid to ease of access and other logistical considerations.

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Emergency room.

Hospitals in Poor Rural Counties Face the Greatest Financial Threat from COVID

By Robert I. Field and Anthony W. Orlando

The latest wave of COVID cases and hospitalizations has raised concerns about the financial resilience of many hospitals in the United States. Throughout the pandemic, we have witnessed shortages of medical supplies, exhaustion of frontline workers, and the overflow of patients beyond the physical capacity of hospital beds and buildings. Now, after nearly two years of repeated COVID surges, there is a real danger that some institutions might run so low on funding that they will need to downsize or close altogether.

Large hospitals in metropolitan areas have, for the most part, weathered the storm. Ample financial resources enabled them to survive with fewer lucrative elective procedures and sudden overwhelming demand for less profitable intensive care for COVID patients. But in many parts of the country, especially rural regions, smaller hospitals lack such financial cushions. For them, COVID could be an existential threat.

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Illustration of a man and a woman standing in front of a DNA helix

A Proposal for Localized Review to Safeguard Genetic Database Privacy

By Robert I. Field, Anthony W. Orlando, and Arnold J. Rosoff

Large genetic databases pose well-known privacy risks. Unauthorized disclosure of an individual’s data can lead to discrimination, public embarrassment, and unwanted revelation of family secrets. Data leaks are of increasing concern as technology for reidentifying anonymous genomes continues to advance.

Yet, with the exception of California and Virginia, state legislative attempts to protect data privacy, most recently in Florida, Oklahoma, and Wisconsin, have failed to garner widespread support. Political resistance is particularly stiff with respect to a private right of action. Therefore, we propose a federal regulatory approach, which we describe below.

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Autopsy of a Failed Health Insurance Experiment: Did It Die of Natural Causes, or Was It Murdered?

By Anthony Orlando

It was just another week for the Trump administration. A senior official resigned after admitting to major ethics violations, the President insulted millions of innocent brown-skinned Americans on Twitter, and quietly—so quietly that almost no one noticed—the Department of Health and Human Services pulled another Jenga block out of the teetering tower that is the Affordable Care Act. Fortunately, it did not fall.

But it did become more expensive. And in that understated tragedy, we find our mystery: Was that HHS’s intent all along?

It all started back in February when Gov. Mary Fallin announced that Oklahoma would submit a 1332 waiver request to the Centers for Medicare and Medicaid Services. At the time, no one really knew how 1332 waivers would work. All they knew was that Oklahoma needed to try something different.

Oklahoma had the same problem that a lot of heavily rural states had. Even with the subsidies in the ACA, it wasn’t very profitable for health insurers to compete in many counties. Sparsely populated areas have always been harder to service. It’s why Lyndon Johnson led the charge to electrify Texas, why rural phone rates went up after the courts broke up Ma Bell, and why small-town Post Offices are closing around the country. Add in the fact that rural Americans pose higher health risks on average, and it’s not hard to see why insurers are wary of setting up shop in these communities. Read More

Introducing New Blogger Anthony W. Orlando

Anthony W. Orlando is joining Bill of Health as a regular contributor.

Anthony is an Assistant Lecturer in the Sol Price School of Public Policy at the University of Southern California, where he is completing his PhD in Public Policy and Management. He also contributes to the Huffington Post. He hosts the podcast “Our American Discourse,” sponsored by the USC Bedrosian Center. He received his bachelor’s degree in economics from The Wharton School of the University of Pennsylvania, as well as a master’s in economic history from the London School of Economics and Political Science. He is a member of the American Society of Law, Medicine & Ethics.

Representative publications:

Please join us in welcoming Anthony!