Topic: International/Political Dimensions

Perilous Medicine: The Quest to Restore Protections for Health Workers

Pervasive violence against hospitals, patients, doctors, and other health workers has become a horrifically common feature of modern war. These relentless attacks destroy lives and the capacity of health systems to tend to those in need. Inaction to stop this violence undermines long-standing values and laws designed to ensure that sick and wounded people receive care.

In his new book Leonard Rubenstein—a human rights lawyer who has investigated atrocities against health workers around the world and core faculty member at the Berman Institute of Bieoethics —offers a gripping and powerful account of the dangers health workers face during conflict and the legal, political, and moral struggle to protect them. In a dozen case studies, he shares the stories of people who have been attacked while seeking to serve patients under dire circumstances including health workers hiding from soldiers in the forests of eastern Myanmar as they seek to serve oppressed ethnic communities, surgeons in Syria operating as their hospitals are bombed, and Afghan hospital staff attacked by the Taliban as well as government and foreign forces. Rubenstein reveals how political and military leaders evade their legal obligations to protect health care in war, punish doctors and nurses for adhering to their responsibilities to provide care to all in need, and fail to hold perpetrators to account.

Bringing together extensive research, firsthand experience, and compelling personal stories, Perilous Medicine also offers a path forward, detailing the lessons the international community needs to learn to protect people already suffering in war and those on the front lines of health care in conflict-ridden places around the world.

In an interview with Global Health Now, Rubenstein explained why he wrote the book:

“I wrote it, first and foremost, for those who take enormous risks to provide care in the midst of war, so that their commitment to health can be matched by a commitment to rights to their protection. At the same time, I wanted to enhance understanding of the pervasiveness of the violence, the logics animating it, and its devastating impacts for millions of people already suffering in war. Another goal was to seek to engage the public health, nursing, and foreign policy communities—and the wider public—in stopping it.”

Read the full Q&A.
Listen to Rubenstein’s appearance on the “Public Health On Call” podcast.
Attend (via Zoom) his Oct. 11 Berman Institute Seminar Series talk, “The Paradoxical Fragility of the Norms of Protection of Health Care in War.”

Rubenstein has spent his career, spanning four decades, devoted to health and human rights. A graduate of Harvard Law School he is now Professor of the Practice at the Johns Hopkins Bloomberg School of Public Health, and Director of the Program in Human Rights, Health and Conflict at its Center for Public Health and Human Rights. At Johns Hopkins, he is also a core faculty member of the Berman Institute of Bioethics and the Center for Humanitarian Health.

Addressing Social Justice Through the Lens of Henrietta Lacks

Among the many disruptions of the pandemic, one particular disappointment was the cancellation of the in-person annual meeting of the American Society for Bioethics and Humanities (ASBH), scheduled for Baltimore and set to coincide with the Berman Institute’s 25th Anniversary Celebration and the centennial of Henrietta Lacks’s birth. Yet despite the switch to a virtual format, the Berman Institute was able to host a plenary session that was the talk of the meeting and continues to reverberate.

“Social Justice and Bioethics Through the Lens of the Story of Henrietta Lacks,” was moderated by Jeffrey Kahn and featured Ruth Faden as a panelist. She was joined by Henrietta Lacks’s granddaughter, Jeri Lacks, architect Victor Vines, and Georgetown University Law Center bioethicist Patricia King.

Faden began the session by providing an overview of the Henrietta Lacks story, famed in the context of structural injustice.

“The structural injustice of racism defined in pretty much every way how this story unfolded,” she said. “What is wrong about what happened to the Lacks family engages every core element of human well-being. There were assaults on the social basis of respect, and of self-determination, on attachments, on personal security and on health. Mrs. Lacks and her children were poor Black people in a segregated world in which the most profound injustices of racial oppression were daily features of their lives.”

Faden was followed by Jeri Lacks who expressed the importance of continuing to let the world know about her grandmother’s story.

“Her cells were used to develop the polio vaccine and to treat HIV, and in creating in vitro fertilization. She is a person who continues to give life, and to preserve life,” said Lacks. “No matter what your race, your age, your social circumstances, she continues to improve your life.”

Victor Vines, an architect who was part of the architect team leading programming and planning for the National Museum of African American History and Culture and led the feasibility study for what will be Johns Hopkins University’s Henrietta Lacks Hall, spoke next about addressing racial injustice through architecture and design.

“When we started work on Lacks Hall, we didn’t talk a lot about architecture or design. We talked about what that story is that we want to tell through the building. Meeting with the Lacks family was critically important to that,” Vines said. “We had to understand what they went through and what they care about. The building still has to function and house the Berman Institute, so we had to meet their needs. And we discovered a third client, the East Baltimore community. At the end of the day, this building and university reside within that community, and they will be called to embrace this project – or not.”

King concluded the panel with a riveting and wide-ranging discussion that touched upon intersectionality, segregation, the Tuskegee experiments and participation in clinical trials, COVID, race as a social construct, and the role of consent, all within the framework of Henrietta Lacks’s story.

“Our narratives are important and should be thought of as lessons or homework for institutions,” she said. “They not only document the deep distrust we bring to health encounters but also convey relevant aspects of our lives that should be appreciated.”

As the session ended Kahn noted that perhaps it was fortunate the session had been virtual, so the recording “could be shared with others for posterity. I’m not quite speechless, but maybe close,” he said.

Failure to Respect Needs of Vulnerable Groups Will Undermine Response

For comprehensive Covid-19 Ethics and Policy Resources, visit our dedicated webpage, bioethics.jhu.edu/coronavirus.

 

 

Berman Institute faculty member Zackary Berger, MD, PhD, has published a new paper in The BMJ, “Covid-19: Control Measures Must Be Equitable and Inclusive,” stating that failure to respect the needs of vulnerable groups will seriously undermine response efforts. His paper says:

“Containment, mitigation, and suppression plans must be as inclusive as possible or risk undermining response efforts. A commitment to inclusion means responding to covid-19 in a way that is sensitive to our most vulnerable communities, including homeless people, those without adequate insurance or employment, communities of colour, indigenous communities, immigrant communities, people with disabilities, and certain frontline healthcare workers and emergency responders.

“Trust begins with communication, and communicating information during outbreaks is challenging, especially as our knowledge of a disease evolves. Inclusive messaging should be tailored and available in a variety of languages, including sign languages. Honest, transparent communication is vital; confusing or contradictory health messaging engenders mistrust and leads people to seek information from unreliable alternative sources. Underserved communities are rightly distrustful of public health institutions: communities of colour and people with disabilities have historically been undertreated or abused through the medical system, and undocumented immigrants fear punitive measures should they present at a clinic or hospital.”

The paper calls for free testing of all patients. Berger also states that during influenza outbreaks, paid sick leave policies could lower influenza infection rates by up to 40% and calls for healthcare institutions to set “the standard by guaranteeing paid sick leave for all employees. Governments should reimburse sick leave expenses for the healthcare enterprises counted on to respond to covid-19 and implement similar programmes to support casual, small business, and gig economy workforces.”

The BMJ (mostly referred to as the British Medical Journal) is one of the world’s top four most cited general medical journals.  Dr. Berger is an internist, clinical epidemiologist, and bioethicist whose clinical, educational, and research work is located at the intersection of shared decision making, patient-centered care and evidence-based medicine. How to make sense of a sharing patient-physician relationship in the context of social and political inequities is a central question underlying much of our health system’s imperfections. Dr. Berger is using interdisciplinary techniques to explore possible answers, especially among vulnerable and victimized populations.

Can Physicians Working in Detention Facilities Uphold Their Hippocratic Oath?

Berman Institute faculty Nancy Kass and Len Rubenstein, along with Paul Spiegel of the Bloomberg School of Public Health’s Center for Humanitarian Health, have published “Can Physicians Work in US Immigration Detention Facilities While Upholding Their Hippocratic Oath?”in the Aug. 30 online edition of JAMA Viewpoint.

The authors state that medical ethics “have been strikingly consistent from Hippocrates to modern-day guidance. Whatever the future of US immigration policy, decent and humane treatment of children, as well as all other detainees, and preservation of the independence of physicians and other health professionals to meet patients’ medical and psychological needs are essential. Now is not a time to change the commitments, reputation, and integrity of physicians and the medical profession.”

The authors put forward a number of concrete steps that should be taken to ensure appropriate treatment of individuals receiving medical care in Health and Human Services (HHS) facilities run by the Office of Refugee Resettlement (ORR). They include:

  • “Health care professionals should insist on and adhere to clinical independence to ensure they are able to provide the highest standards of care that are in the best interests of the patient. This independence also demands that physicians and other health care professionals are not subject to retribution for reporting … about their evaluations of conditions of detention that impede their patients’ health and the availability of quality medical care.”
  • “There needs to be an independent health oversight body that monitors all aspects of preventive and curative health services, outcomes, and standards in DHS and ORR/HSS immigration detention facilities, assesses health care practitioners’ ability to uphold their primary professional obligations, and issues timely recommendations. The proposed independent oversight body should be completely insulated from government interference and be granted full access to all DHS and ORR/HSS detention facilities, their personnel, and patient medical records at any time.”
  • DHS and ORR/HHS should be required to report on a regular basis how they are meeting their own and international standards for each facility for which they are responsible. While Customs and Border Patrol, Immigration and Customs Enforcement, and ORR standards exist, they should be assessed independently to ensure they are sufficient and meet international standards. Furthermore, their responses to the independent health oversight organization should also be made public.”

Nancy Kass is the Phoebe R. Berman Professor of Bioethics and Public Health and the Berman Institute’s Deputy Director for Public Health. Len Rubenstein is core faculty at the Berman Institute and the Director of the Program on Human Rights, Health and Conflict at the Bloomberg School’s Center for Public Health and Human Rights. Paul Spiegel is Director of the Center for Humanitarian Health at the Bloomberg School.

Mario Macis, PhD

  • National Institutes of Health (NIH) “Creative and Novel Ideas in HIV Research (CNIHR) grant for “Behavioral nudges, information and incentives for HIV testing: A field experiment in Ecuador”, 2016-18.
  • Johns Hopkins University Discovery Award, 2016.
  • Johns Hopkins University early-career Catalyst Award, 2015.
  • Johns Hopkins University Alumni Association Excellence in Teaching Award, 2013.
  • National Science Foundation (NSF) Grant for “Field Experiments on Incentives and Blood Donations”, 2009-12.

Charting an Ethical Course in Conflict Zones

In violent contexts like Syria, frontline health workers face wrenching ethical decisions. When a hospital is bombed, leaders have to decide whether to move to a safer location—possibly decreasing access to care in the area. Heightening the ethical challenge, local communities may be placed at greater risk, and thus oppose the hospital’s reopening.

Berman Institute faculty member Len Rubenstein has played a leading role in the creation of a new report from the Center for Public Health and Human Rights and the Center for Humanitarian Health, along with the International Rescue Committee and the Syrian American Medical Society, that addresses some of the unique and difficult challenges humanitarian health organizations working in settings extreme violence.  The report, based on almost 100 interviews with organizational managers and front-line health workers, identifies these challenges and makes recommendations to humanitarian organizations to develop processes – now rarely in place – to address the questions in a structured and systematic way.

They advise committing time, resources and regular training to address ethical issues, and creating a process to record and disseminate decisions.

Read the report.

Berman Faculty share response to human gene editing claims

A renegade. But not a charlatan.

That was the opinion of a group of Berman Institute faculty about He Jiankhi, the Chinese scientist who claims to have used the gene-editing tool CRISPR to edit the embryos of twin girls that he said were born last month.

In the wake of He’s announcement, the Berman Institute held a Dec. 10 panel discussion, “Ethics, Policy, and Human Genome Editing—What’s Now? What’s Next?” for the faculty and students of the JHU School of Medicine’s Institute of Genetic Medicine (watch below).

Berman Institute Director Jeffrey Kahn was in Hong Kong to attend the Second International Summit on Human Genome Editing when the news of He’s actions broke.

“If true as reported – and He, who has now vanished from sight, has not published any data that would confirm his action – this would be an extremely premature and ethically problematic experiment in creating genetically modified children,” said Kahn.

Kahn was joined on the panel by Debra Mathews, who gave a brief scientific introduction to genetic modification, and Jeremy Sugarman, who outlined a number of the ethical issues raised by He’s actions, including lack of oversight, the possibility of off-target effects, the informed consent of the parents, the prospect of genetic enhancement raised by He’s actions, and the need for responsible follow-up, among others.

The panel stated that He’s actions would be illegal in many countries, including the United States, and that recent developments suggest that Chinese authorities are investigating their legality in his native country.  Such an experiment also violates the recommendations in the international consensus report issued in 2017.

“The creation of these gene-edited children violates virtually every existing guideline, policy, norm, and value surrounding the use of this technology,” said Kahn, who was interviewed by numerous media outlets about He’s actions, including the Washington Post, NPR, and Vox.

Kahn said that the Berman Institute would continue to organize programs and provide additional ongoing response about the bioethical implications of human gene editing.