People taking part in the "Lights4Liberty" protests against President Trump's planned ICE raids against immigrants and the detention centers along the southern border. The protestor is carrying a sign that reads, "Child detention camps destroy children."

Memory, Trauma, and Asylum Law: A Role for Neuroscience?

This post is part of our Eighth Annual Health Law Year in P/Review symposium. You can read all of the posts in the series here. Learn more about the event and stay tuned for video of each session on the Petrie-Flom Center’s website.

By Francis X. Shen and Aldis H. Petriceks

Today hundreds of thousands of asylum seekers await their hearings. Multiple studies conducted in 2019 confirmed that the conditions of detainment are often deplorable. The federal government recently acknowledged a lack of adequate medical and mental health care at the Southern Border, and the U.S. Civil Rights Commission issued a 200-page report documenting the Human Cost of Inhumane Immigration Policies, highlighting the severe damage to child and adult mental health at the border. All the while, despite public outrage and government claims to the contrary, family separation has remained prevalent. Read More

Surrealist black and white photograph of a person wearing a bowler hat and button down shirt. Ther person's face is obscured totally by a tiny cloud

DNA Phenotyping Experiment on Uighurs Raises Ethical Questions About Informed Consent

By Beatrice Brown

On December 3, The New York Times broke shocking news: China has been using the DNA of Uighurs, a Muslim minority group who have been facing increased persecution, to create an image of a person’s face using a process called DNA phenotyping. The Uighur men were living in Tumxuk (a city in the Xinjiang region), which The New York Times notes being described by Chinese state news media as “one of the gateways and major battlefields for Xinjiang’s security work.” The New York Times introduced many troubling ethical issues, including the potential for increased social surveillance and thus increased “state discrimination” of this vulnerable ethnic minority, but here, I wish to focus on the issue of informed consent.

Informed consent is essential to conducting ethical research. Premised on respecting the autonomy of participants, informed consent requires that participants understand the research that they are consenting to be involved in, including potential risks and benefits of the research. However, what exactly constitutes true, valid informed consent to research is a contentious issue. There are two concerns about the validity of the informed consent process in this DNA phenotyping experiment. Read More

Up close shot of an orange prison jumpsuit

Denying the Insanity Defense: A Repudiation of Science and Justice

By Laura Karas

The Supreme Court this term faces a difficult question: Is it unconstitutional for a state to abolish the insanity defense? In the case before the court, Kahler v. Kansas, a plaintiff who suffered from multiple psychiatric disorders, including severe depression, shot and killed his wife, two daughters, and mother-in-law. He was denied the opportunity to present an insanity defense under Kansas law and was sentenced to death. Kansas is one of four states to have abolished the insanity defense, along with Idaho, Montana, and Utah.

The insanity defense in its modern form contains two prongs. First, a person is not responsible for his criminal conduct if he could not “conform his conduct” to the requirements of the law due to mental illness. This prong is sometimes referred to as the volitional prong of the insanity defense. Second, a person is not responsible for his criminal conduct if, due to mental illness, he could not appreciate the wrongfulness of his actions. Since the 1980s, many states have rejected the volitional prong of the insanity defense, and some states, such as Kansas, have gone so far as to abolish the insanity defense entirely. Read More

Statue of Justitia, the Roman goddess of Justice, placed in front of a large open book on which a gavel has been placed.

Amparo en Revisión 1388/2015 and the “Rights” Discourse in Mexico

Friday, October 4, the Petrie-Flom Center will host “Abortion Battles in Mexico and Beyond: The Role of Law and the Courts,” from 8:30 AM to 12:30 PM. This event is free and open to the public, but registration is required. 

By Patricia del Arenal Urueta

Since June of 2011, the Mexican Constitution includes a variety of clauses that would undoubtedly classify as “progressive.” Article 1 incorporates all human rights protected by international treaties into the Constitution itself; and this means that every authority (including, of course, judges) should interpret the law in order to reach the most comprehensive protection of human rights. It is a beautiful and promising text. It follows a global tendency premised on the notion that international human rights are the standard by which it is possible to scrutinize any act (or decision) claiming political and legal authority over individuals.

However, given the alarming data showing an important increase in human rights violations over the past few years in Mexico, there are good reasons to feel uneasy about the efficacy of such an ambitious amendment. There is a striking disparity between its idealistic pretensions and the appalling reality. This phenomenon has prompted questions harder to address than those concerns typically attributed to a fragile Rule of Law. In fact, some scholars and other institutions have wondered whether such constitutional discourse serves as a sham. The idea behind this argument is that a text so grand can mostly serve to mask the government’s intention (deliberate or not) to actually do the opposite; this is, to advance policy uncommitted ─or even contrary─ to human rights, and to distract the international community from facts that it would probably disapprove.

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Photograph of a woman lying in a hospital bed holding her newborn wrapped in a blanket

Where Are the Legal Protections for People Mistreated in Childbirth?

By Alexa Richardson

A new study indicates that 28.1% of women birthing in U.S. hospitals experienced mistreatment by providers during labor, with rates even higher for women of color. The multi-stakeholder study, convened in response to World Health Organization efforts to track maternal mistreatment, included more than 2,000 participants, and defined mistreatment as including one or more occurrences of: loss of autonomy; being shouted at, scolded, or threatened; or being ignored, refused, or receiving no response to requests for help. The study newly highlights the lack of legal protections available to for pregnant and birthing people who experience these kinds of mistreatment by providers.

Campaigns like Exposing the Silence have chronicled the outpouring of people’s harrowing birth stories, riddled with abuse and violations of consent. In one typical account, a user named Chastity explained:

I had a room full of student doctors, an OB I never met come in and forcibly give me extremely painful cervical exams while I screamed for them to stop and tried to get away. They had a nurse come and hold me down. There was at least 10 students practicing on me. I was a teen mom and my partner hadn’t gotten off work yet so I was all alone.

Another user named Abriana recounted:

As I was pushing, I got on my side and it was then that I started to feel pain much different from labor pains. I asked, ‘What is going on?’ The nurse replied, ‘I am doing a perineal rub.’ I immediately said, ‘Please stop doing that. You are hurting me.’ The nurse argued, ‘It will help you’ and didn’t move. I asked her again to please stop. I then yelled, while pushing, ‘Get your hands out of me!’ The nurse continued.

The traditional modes of seeking legal recourse have little to offer those who experience these kinds of mistreatment.

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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 still am for its use as 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 from 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 family’s 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.

Read More

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.

Photo of a stethoscope, gavel, and book

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.

Read More

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

image of a genetic screen

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