Photograph of commercial fishing vessels

How Thailand’s Fishing Industry and Your Tuna Melt Are Linked to Human Trafficking

By Stephen Wood

I used to be averse to mayonnaise and I am still am for its use a a condiment or in dishes like coleslaw or potato salad. My grandmother made our potato salad with oil and vinegar and lots of garlic and our coleslaw was vinegar-based too. I would tell friends that I was allergic to mayonnaise so that they wouldn’t slather it on my bologna sandwich or make me eat chicken salad. I’m not sure why this is the case; mayonnaise is made form stuff I like — eggs, salt, and vinegar — and when homemade can be really delicious. It’s just weird. But something changed that. I wanted to eat tuna. Not the blue or yellow-fin tuna that you grill as a steak or to enjoy as sushi, but canned tuna. This transition happened when I moved out of my families home and into an apartment. I was working and living on my own and soon realized I needed to eat on the cheap. I wasn’t used to eating on the cheap. I like lobster, escargot, flank steaks, and good wine. But I was broke and on a budget so I decided that I was going to brave it and eat canned tuna. With mayonnaise. I perfected a recipe. It has tuna, mayo, celery, onion, cumin seeds, and salt. It’s topped with shredded cheese and toasted and it is delicious. I’ve overcome my aversion to mayonnaise for this one thing, and also occasionally deviled eggs. But there is a problem.

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Photo of a globe with a bandage tied around it

Struggles for Human Rights in Health in an Age of Neoliberalism: From Civil Disobedience to Epistemic Disobedience

This is the abstract of a paper by Alicia Ely Yamin. You can read the full paper in the Journal of Human Rights Practice here.

By Alicia Ely Yamin

Abstract

Like other contributors to this special issue and beyond, I believe we are at a critical inflection point in human rights and need to re-energize our work broadly to address growing economic inequality as well as inequalities based on different axes of identity. In relation to the constellation of fields involved in ‘health and human rights’ specifically—which link distinct communities with dissonant values, methods and orthodoxies—I argue that we also need to challenge ideas that are taken for granted in the fields that we are trying to transform. After setting out a personal and subjective account of why human rights-based approaches (HRBAs) are unlikely to be meaningful tools for social change as they are now generally being deployed, I suggest we collectively—scholars, practitioners and advocates—need to grapple with how to think about: (1) biomedicine in relation to the social as well as biological nature of health and well-being; and (2) conventional public health in relation to the social construction of health within and across borders and health systems. In each case, I suggest that challenging accepted truths in different disciplines, and in turn in the political economy of global health, have dramatic implications for not just theory but informing different strategies for advancing health (and social) justice through rights in practice.

The End of Dramatic Legal Saga: French Patient Vincent Lambert has Died

By Audrey Lebret

There are few cases as publicized in France as the story of Vincent Lambert, a patient in a vegetative state whose fate deeply divided his family. On June 28, 2019, the Cour de Cassation signed the last substantial decision of the Vincent Lambert case, after six years of proceedings. The patient died on July 11, 2019.

The facts

In 2008, Vincent Lambert was involved in a traffic accident that left him in a quadriplegic state and suffering from massive brain trauma. In 2011, a medical evaluation described his state as minimally conscious. Doctors tried to establish a code of communication to which he was never responsive. Nonetheless, doctors tracked some behaviors that they interpreted as an opposition to treatments and a refusal to live (Conseil d’Etat judgement, at 20). In 2013, his doctor initiated a procedure with the agreement of Mr. Lambert’s wife in order to interrupt the treatments. That initiated a lengthy court battle.

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Laboratory IVF petri dish under a microscope.

Fertility Fraud: Major Developments in Texas, Idaho, and Indiana

By Jody Lyneé Madeira

Spring of 2019 brought flowers, showers…and many updates on the “fertility fraud” front.

Perhaps the biggest developments are on the legislative front. On May 5, Indiana Governor Eric Holcomb signed Senate Bill 174 into law, creating civil and criminal causes of action for fertility fraud for former patients and their offspring (and donors whose gametes were used in an unconsented-to manner).

Plaintiffs who sue in tort can be reimbursed for the costs of the fertility procedure and $10,000 in damages. The act makes it a level 6 felony to make a misrepresentation involving human reproductive material and a medical procedure, medical device, or drug. Read More

How Might we Approach Discussions on the Implications of Using Genetic Data from a Human Rights or Social Justice Perspective?

By Alicia Ely Yamin and Jonathan Chernoguz

To complement the Petrie-Flom Center’s annual conference this year, Consuming Genetics, the Global Health and Rights Project at Petrie-Flom (GHRP) convened a small meeting of feminists, students, and other activists. On May 16, Harvard University’s Global Health Education and Learning Incubator , which co-sponsors GHRP, hosted the forum in conjunction with Marcy Darnovsky and Katie Hasson of Center for Genetics and Society (CGS).

Focusing on “Gene Editing, Ethics, Rights and Health Equity Issues,” and in particular the irrevocability of germline gene editing, the meeting began with Marcy Darnovsky, Executive Director of CGS asking, “How might we begin the discussion from [the perspective of] human rights, feminism, equity, and social justice, rather than from the science and biotechnology?”

This question echoed some of those posed during the Consuming Genetics conference, for example, by Jonathan Kahn in interrogating the equivocation of social diversity and empirical diversity in genomic research.  Read More

Image of Normal blood cells next to a sickle blood cell, colored scanning electron microscope image.

Recharting the Course of Sickle Cell Disease – Who will Benefit?

By Vence L. Bonham and Anitra Persaud

Scientific advancements in gene therapy and the implications of leveraging this technology to develop new curative therapies are at the forefront of medical research. Sickle cell disease (SCD), the most common genetic blood disorder, stands center stage. Last month, 60 Minutes aired a segment showcasing the story of a patient at the NIH Clinical Center who is on her journey to a cure of sickle cell disease (SCD) with the help of an experimental gene therapy.

Preliminary clinical trial findings suggest that gene therapy has an acceptable level of safety and can help individuals with the disease produce normal red blood cells instead of the sickle-shaped ones that underlie the physiological basis of the disease and its complications. Given these promising results, there is hope that gene therapy may catalyze a turning point for the SCD population, a community that has long suffered the debilitating effects of not only their disease, but of longstanding neglect within the medical system and research enterprise. Read More

Illustration of mitochondrial donation

Time to Revisit the Prohibition on So-Called “Three-Parent IVF”?

In an editorial appropriately titled, “This Editorial Is Not About Designer Babies,” the New York Times supported efforts by the Petrie-Flom Center and suggested it was time for Congress to consider lifting the effective ban on mitochondrial replacement therapies — sometimes colloquially but inaccurately referred to as “three-parent IVF.”

The piece referred to the Petrie-Flom Center’s upcoming public event and Roundtable, where experts will have a general conversation about the state of the law in the U.S. and elsewhere and to, as a group, discuss whether the prohibition against MRT might be lifted and, if so, how that might be accomplished.

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A social inequality icon in São Paulo, Brazil's biggest city: The Paraisópolis Favela and the luxury buildings

Wealth Inequality is a Vital Public Health Issue

Every day, 10,000 people die because of a lack of health care. Yes, every day. That’s over 3.5 million people annually. This shocking statistic comes from a report released last month by Oxfam.

The primary topic of Oxfam’s report was not global mortality rates or health coverage. Rather it was about global wealth and income inequality. Oxfam’s title for the press release containing this information was “Billionaire fortunes grew by $2.5 billion a day last year as poorest saw their wealth fall.” Read More

Handcuffs on a pile of pills

Emergency Department Psychiatric Holds: A Form of Medical Incarceration?

Wait times and length of stay in emergency departments are a hot topic and often result in a variety of identifiable harms that include medical error and failures to meet quality care measures. Patients with psychiatric conditions, including suicidal ideations, risk for harm to others, or psychosis, are particularly vulnerable to increased emergency department (ED) lengths of stay. The length of ED holds for psychiatric patients can be three-fold that of similar holds for medical patients. Lack of access to appropriate care, comorbid medical illness, or violent behavior can all contribute to this.

Increased length of stay impacts the efficiency of the ED itself, increasing wait times, utilizing human resources and physical space. It has a more important impact, however, on the patient. Patients may be held in a small room with constant observation for days with little or no access to natural light, bathing facilities or contact with family or friends. They may be dressed in paper gowns, told when to eat, when to sleep and confined to their room for days at a time, emulating the conditions in a maximum security prison. Emergency Departments, through no fault of their own, are becoming holding cells for patients who are both vulnerable and often marginalized.

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A protester holds a sign with a quote that reads: "Pf all the forms of inequality injustice in health care is the most shocking and inhumane."

We Shouldn’t Be Focusing on Whether Healthcare Is a Right

The call for “Medicare for All” has grown louder and its cadence more frequent. Even President Obama has expressed support for it. Increasingly, as policymakers and stakeholders debate the path forward for healthcare in the U.S., a familiar invocation of human rights language can be heard.

The sentiment that “healthcare is a right” — rather, that it should be a right — has many layers. Its complexity is more accurately captured as “health(care) is a (human) right”. These parens make my head spin, too. They also suggest that Medicare for All is at best a piecemeal solution to the causes of poor health in the U.S. Read More