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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human embryos under a microscope

A Lawsuit Involving an Alabama Man and a Fetus Is Particularly Threatening to Reproductive Rights

Last week Alabama passed the most restrictive abortion law in the country, criminalizing abortion of “any woman known to be pregnant,” with very limited exceptions that do not include rape or incest. But a recent case in Alabama presents an even more threatening challenge to reproductive rights.

In a new paper published in JAMA, the Journal of the American Medical Association, authors Dov FoxEli Y. Adashi, and I. Glenn Cohen, discuss a recent Alabama state court case involving a man suing an abortion clinic and the manufacturer of a pill that enabled his then-girlfriend to terminate her pregnancy at 6 weeks.

In a troubling decision, the court permitted the fetus be a co-plaintiff alongside the man in a “wrongful death” lawsuit. 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

Do You Own Your Genetic Test Results? What About Your Temperature?

By Jorge L. Contreras

The popular direct-to-consumer genetic testing site AncestryDNA claims that “You always maintain ownership of your data.” But is this true?  And, if so, what does it mean?

For more than a century, US law has held that data – objective information and facts – cannot be owned as property. Nevertheless, in recent years there have been increasing calls to recognize property interests in individual health information. Inspired by high profile data breaches and skullduggery by Facebook and others, as well as ever more frequent stories of academic research misconduct and pharmaceutical industry profiteering, many bioethicists and patient advocates, seeking to bolster personal privacy and autonomy, have argued that property rights should be recognized in health data. In addition, a new crop of would-be data intermediaries (e.g., Nebula Genomics, Genos, Invitae, LunaDNA and Hu.manity.org) has made further calls to propertize health data, presumably to profit from acting as the go-betweens in what has been estimated to be a $60-$100 billion global market in health data. Read More

Two senior women jogging in a park

What Should We Ask About Age-Based Criteria in Healthcare?

In the American health care system, age shapes patients’ options. Most people over age 65 are eligible for Medicare, which is inaccessible to almost everyone under 65.

But many providers limit older patients’ access to certain interventions—like in-vitro fertilization or organ transplants. Some clinical research studies also exclude older patients, while others stratify populations by age. And insurers in the Affordable Care Act’s individual marketplaces can legally charge older patients up to three times as much as younger patients, which has motivated calls to let people below 65 buy into the Medicare program (although these proposals use age 55 as an eligibility criterion). Many of these uses of age have generated debate in the past, and are likely to continue to generate debate in the future. Read More

Pernicious Epistemically Justified Distrust and Public Health Skepticism

By Mark Satta and  Lacey J. Davidson

In recent years philosophers concerned with epistemic, moral, and political matters have identified many different types of epistemic injustice. Epistemic injustice refers to “forms of unfair treatment that relate to issues of knowledge, understanding, and participation in communicative practices.”

We are particularly concerned with epistemic injustices in the public health context and the consequences such injustices have for those most marginalized within our current society. When powerful entities act badly, individuals and communities justifiably distrust those entities. This distrust then guides individuals and communities in making decisions with respect to these entities, often causing them to avoid the entities in question. We are concerned with cases in which the distrust is harmful to the individual, even when it is justified. We think this circumstance is particularly common and troublesome in the public health context. Read More

Abstract representation of DNA double helix

Gene Editing and Intellectual Property: A Useful Mix?

The Health Policy and Bioethics Consortia is a monthly series that convenes two international experts from different fields or vantage points to discuss how biomedical innovation and health care delivery are affected by various ethical norms, laws, and regulations.

They are organized by the Harvard Medical School Center for Bioethics and the Program on Regulation, Therapeutics, and Law (PORTAL) at Brigham and Women’s Hospital, in collaboration with the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. Support provided by the Oswald DeN. Cammann Fund at Harvard University.

A light lunch will be provided. This event is free and open to the public, but space is limited and registration is required. Please note that attendees will need to show ID in order to enter the venue. Register now!

 

One way of thinking about genome editing is through the lens of the legal and ethical obligations of ensuring the technology is deployed safely and accurately, for the betterment of human society.

Or, if that’s a mouthful for you, genome editing’s rights—and wrongs. Which brings me to a talk I’ll* be giving at Harvard Medical School on March 8: “Genome Editing: Rights and Wrongs” I feel obligated, however, to asterisk the personal pronoun (“I”) because, in truth, what I’ll be doing is sharing the stage with one the world’s most celebrated scientists, George Church, world-renowned bioethicist, Jeantine Lunshof, and moderated by health policy guru, Aaron Kesselheim. 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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NHS logo on the side of a building

Update on the Future Direction of Patient Safety in the National Health Service

Matt Hancock, the Secretary of State for Health and Social Care on February 6 gave a wide-ranging speech on the future direction of patient safety in the NHS. The speech is important as it gives key insights into government priorities for patient safety policy development in the NHS.He stated that we all trust nurses and doctors more than any other profession. He spoke about the importance of a “just culture” in the NHS and openness, honesty, and trustworthiness. Read More

US servicemembers pictured from behind, saluting

“Homecoming” to a History of Servicemember Experimentation

Much ado has been made about Amazon’s new hit, “Homecoming,” which recently received three Golden Globe nominations, including one for best drama series. The psychological thriller, directed by “Mr. Robot” creator Sam Esmail and starring Julia Roberts, has been characterized as “an irresistible mystery-box drama” and “the good kind of ‘what the hell is going on here?’ TV.” Tim Goodman described the show, which was adopted from Eli Horowitz and Micah Bloomberg’s Gimlet Mediacult hit” podcast of the same moniker, as a “dazzling” play “on memory, the military industrial complex, conspiracy and unchecked government privilege.”

The series revolves around novice caseworker Heidi Bergman’s (Roberts) experiences administering the Tampa, Florida-based Homecoming Transitional Support Center (HTSC). HTSC is a privately-run, Department of Defense (DoD) contract facility, which purports to assist combat-traumatized servicemembers readjust from the battlefield and reintegrate to civilian life. Indeed, Bergman opens the drama’s aptly-titled pilot, “Mandatory,” by explaining to her “client,” three-tour-combat-veteran Walter Cruz (Stephan James), that the treatment facility is “a safe space for you to process your military experience and re-familiarize yourself with civilian life in a monitored environment, which, just means getting you situated now that you’re back home, rear-wise, health-wise, basically, I just work for you.” Read More