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By Clayton Jones, LCDR, CHC, USN, Kevin Mintz, PhD, Andrew Peterson, PhD

America is winning the battle against COVID-19. As of mid-June, over 50% of Americans have received at least one COVID-19 vaccine, and pandemic-related deaths are on the decline. But with this breath of optimism comes time to reflect on the Americans we failed, and time to focus on improving our infrastructure to prevent future disasters.   

For Americans with disabilities, President Biden’s infrastructure proposal, with its focus on care services, is a necessary step in this direction. But Republicans and moderate Democrats are resistant, even though the proposal has bipartisan support among the majority of Americans.…

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by Robert Macauley MD

Next to “Clinical Ethicist” in the dictionary, there really ought to be a photo of Bob Orr. Not only was he at the forefront of what was then a nascent field, his writing, teaching, and mentoring influenced and molded the next generation of clinical ethicists.

After completing a postdoctoral fellowship at the Maclean Center for Clinical Medical Ethics at the University of Chicago in 1990—back when that was one of the few such training programs in existence—he went on to start the clinical ethics program at Loma Linda University Medical Center, before returning to his adopted home state to start the Department of Clinical Ethics at the University of Vermont, too.…

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06/03/2021 Barcode Me

by Anne Zimmerman, JD, MS

I use the phrase “Barcode me” to verbalize the idea that my data is my own and that when anyone stands to use it for financial gain, I should be paid. The big data landscape with its massive capabilities can trace data at many points in the aggregation process. Pieces of metadata are merged into larger aggregate pools and deidentified along the way. Whether I am barcoded or represented by a QR code or even a shape or algorithm, there are ways to compensate me. I prefer Venmo but PayPal is fine too.

Privacy in the big data landscape is crucial in the context of personal, and especially health data, and many people wonder whether deidentification is enough to keep data safe.…

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by Robert Klitzman, MD

This editorial can be found in the latest issue of American Journal of Bioethics. https://www.tandfonline.com/doi/full/10.1080/15265161.2021.1913894

On September 5, 2020, the International Commission on the Clinical Use of Human Germline Genome Editing, established by the U.S. National Academy of Medicine (NAM), the National Academy of Science, and the British Royal Society, with members from 10 countries, issued its Report, recommending caution in future uses of heritable human genome editing (HHGE) (National Academy of Medicine, the National Academies of Sciences and the Royal Society 2020). The report carefully considered a range of key issues, and marks a significant and impressive achievement, but also raises and highlights several additional crucial ethical challenges that various stakeholders will likely confront and that also need attention.…

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by Kyle Ferguson, Ph.D., and Arthur Caplan, Ph.D.

On May 10, 2021, the F.D.A. authorized the Pfizer-BioNTech coronavirus vaccine for use in 12- to 15-year-olds. The C.D.C.’s A.C.I.P. convened on May 12th to review clinical trial data and unanimously voted to recommend using the vaccine in this cohort. As a result, young teens started getting their shots and the protection we owe them. By getting vaccinated, these youths will help our nation achieve valuable collective goals.

We think this is welcome news. However, the expanded authorization is reigniting debates about the ethics of global vaccine distribution in the pandemic context: our kids versus the needs of the world.  …

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by Joseph Stramondo, PhD

The COVID-19 pandemic reveals systemic health inequities in ways that are hard to ignore.  These inequities tracked race, class, and several other overlapping and interlocking oppressions, including ableism. Ableism roughly refers to an ideology that disrespects and unjustly disadvantages disabled people on account of their disability.  Ableism can appear in the attitudes and beliefs of individual people or it can be “baked in” to a system of institutions and practices.   Systemic ableism was most apparent early on in the pandemic, in the way crisis standards of care were initially drafted that deprioritized disabled people for critical treatment based on problematic notions of quality of life.…

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 by Keisha Ray, PhD

One of the social determinants of health is housing. Although in my work I discuss all of the social determinants of health, I tend to focus on the importance of housing because where we live, our zip code, with whom we live, the country, state, and city we live in can tell us a lot about people’s access to healthy food, recreation areas, clean water and air, and public transportation. Where a person lives can also tell us about their proximity to crime, environmental toxins (e.g. landfills, etc), which are all social determinants of health. Housing is an important determinant of health in its own right but it also tells us about people’s access to other determinants of health.  …

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by Mildred Cho, PhD

Recently, on a panel at a conference of a medical professional society, the president of the society used a racist term that is an ethnic slur used to refer to Asians. The speaker did not publicly apologize but did resign from official duties of the society. Other leaders of the society issued a series of underwhelming apologies, the final one asking for “tolerance”. This request puzzled me. Did it mean there should not be harsh consequences for using a racist term in a professional setting? Why should I or anyone else tolerate this behavior? This incident, and in particular the muted reaction of colleagues, forced me to articulate arguments for why it is important to call out racist language amongst our professional peers.…

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by Brian M Cummings M.D.  and John J. Paris S.J.       

Vaccine passports are likely to become a necessary part of our lives until we achieve herd immunity and no longer need worry about contracting a potentially life-threatening virus from strangers. Such ‘passports’ might not be the first item on our wish list.  But the arguments for their use are basic and compelling. As Gostin and colleagues’ recent article notes, vaccine passports encourage people to be vaccinated and allow a reopening of the economy.  For those who want—as much as possible– to recover life as it was prior to the pandemic, they will become a necessity. …

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by Anne Zimmerman, JD, MS

Vaccination hesitancy calls for a social sciences approach, not merely a public health data driven solution, nor necessarily a legal one. Nonmedical costs of eliminating religious exemptions should be considered. Ending religious exemptions risks increasing rights extremism and suffering its societal effect on all other public policies. By bringing those who are fighting to preserve the religious exemption into the discussion, a unified approach or compromise may be possible. Alienating them may cause more harm than good.

When rights-based activists protest, as they did in Connecticut this week and in New York last year, they empower a movement that effects issues well beyond vaccination.…

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