Works in Progress - Autumn 2020

The Ethics of Consent

By Harriet A. Washington | September 30, 2020
Montgomery Martin/Alamy
Montgomery Martin/Alamy

Harriet Washington is a science writer, editor, and ethicist whose book Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present received the National Book Critics Circle Award for Nonfiction. Her latest book is A Terrible Thing to Waste: Environmental Racism and Its Assault on the American Mind. We asked her to pose four questions on the future of medical care.

1. “Truth,” it has been said, “is the first casualty of war.” Perhaps, but in the war against Covid-19, the sacred right to informed consent fell first. This should come as no surprise. From the vast numbers of African Americans forced into medical research to the violent, non- consensual research performed by Third Reich doctors to the secret Project Coast biological and chemical weapons program undertaken by apartheid South Africa, medical consent has often been curtailed in the name of wartime expediency and medical urgency. The rush to find a treatment for Covid-19 has likewise led doctors to administer experimental drugs without patients’ express consent. For example, in a Texas nursing home in April, a doctor named Robin Armstrong administered the drug hydroxychloroquine to 39 Covid-19 patients, some of whom also had dementia, arguing that the urgency of the situation justified his failure to elicit informed consent. In June, the U.S. Food and Drug Administration withdrew emergency-use authorization for hydroxychloroquine as a treatment for Covid-19 based on its failure to show benefit and alarm over its adverse effects. How can we ensure that informed consent is preserved amid the urgency of future outbreaks of infectious diseases?

2. The coronavirus pandemic is also catalyzing a transformation of the ambulance. Desperately ill Americans have been met by ambulances pressed into service as mobile research laboratories, showing that little has changed in recent years. A 2006 trial in which emergency medical technicians infused nonconsenting patients with an artificial blood substitute, PolyHeme, was widely decried, but the laws that permitted it remain in place. Withdrawal of standard care is also under way as ambulance EMTs in some cities, like Newark, have even ceased offering necessary cardiopulmonary resuscitation because they fear becoming infected with Covid-19. How can we preserve the life- saving mission of the ambulance so that coronavirus patients will receive adequate urgent care, rather than limited care or treatments that may serve research agendas?

3. Hospitals in some states, such as Alabama and Washington, have also dealt with widespread shortages of preventive gear, ventilators, intensive-care beds, and staff by adopting care-rationing policies, including a species of “triage” that bars the elderly and the disabled from life-saving care. On March 28, the Department of Health and Human Services Office for Civil Rights admonished states and health care institutions, reminding them that these individuals are protected from such discrimination by law, but the neoeugenic discussions continue. Michael Hickson, a 46-year-old, wheelchair-bound African American with Covid-19, died on June 11 at the St. David’s South Austin Medical Center in Texas after treatment, food, and water were withheld from him for six days, according to his wife and against her stated wishes. In today’s straitened circumstances, how do we protect vulnerable patients from eugenic judgments that may cost them their lives?

4. In April, French physicians Camille Locht and Jean-Paul Mira proposed conducting placebo studies in Africa in which a large portion of the subjects would likely receive no standard therapy for Covid-19. This was met with outrage, but their proposal was not a novel one: conducting ethically troubling studies in the developing world has long been quietly suggested and reported in medical literature. At least two-thirds of corporate clinical trials are now conducted in Africa and the developing world, much more quickly and cheaply than in the States. Such studies are regulated by the Declaration of Helsinki, which offers lower standards of protection than U.S. law. Yet public health experts and the news media express wonder at the “fears” that may make Africans and even African Americans loath to embrace a Covid-19 vaccine when it is deemed ready for market. Instead of decrying people’s wariness and dismissing them as “anti-vaxxers,” how can we create a more trustworthy health care system, especially as it relates to Covid-19 vaccine design and dissemination?

Permission required for reprinting, reproducing, or other uses.

Comments powered by Disqus