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

protesters carry signs that say "refugees welcome" in

Words Matter: How Refugees of Torture Became a “Migrant Caravan”

San Pedro Sula in Honduras was the murder capital of the world for decades, a title it lost only a few years ago to Caracas, Venezuela in 2016.

At its peak, there were an average of three murders a day, which is alarming for a city with a census population of around only 765,000. This violence is fueled by a booming drug and weapons trade, one-third of the population facing unemployment, the presence of violent gangs, and political strife that make living in Honduras a daily life or death struggle.

When framed this way, it is clear to see that the term “migrant caravan” doesn’t at all describe this group marching from Honduras, through Mexico to the United States border. Let’s not let politicos or the media brand them as anything else. Terminology is important here, and the term “migrant caravan” doesn’t even begin to describe this group.These people are victims of torture, fleeing a violent landscape to seek asylum for themselves and their families. Anything less than that is a disgraceful mischaracterization of who they actually are.

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The Intersection of Human Trafficking and Immigration

57,000.

That is the appalling number of individuals estimated to be involved in human trafficking in the United States, and it is more than likely a relatively conservative estimate.

Even more appalling is that there are approximately 50 million people who are victims of human trafficking worldwide. This is an industry driven by sex, with 80 percent of trafficked individuals engaged in sex trafficking of some form.

Woman account for about 80 percent of individuals involved in sex-trafficking, with some estimates stating that a quarter of these cases involve minor children. The average age for females at the time of entry into sex-trafficking is thought to be between 17–19 years old.

Victims of both sex and labor trafficking include United States citizens, but also many foreign nationals, mostly from Mexico, Central and South America, as well as the Caribbean. Now more than ever, these victims of a horrific crime are at significant risk, not just from their traffickers but from something else that can cause significant harm: the fear of deportation.

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Compulsory Genetic Testing for Refugees: No Thanks

By Gali Katznelson

lab worker testing dna
DNA tests are not perfect and they can be vulnerable to manipulation. The UNHCR says genetic testing is an invasion of privacy. (Photo by andjic/Thinkstock)

Recent reports claim that Attorney General Jeff Sessions is considering using genetic testing to confirm the relationships of children who enter the country with adults to determine if they share a genetic relationship.

The website the Daily Caller reported that Sessions suggested in a radio interview that the government might undertake genetic testing of refugees and migrants in an effort to prevent fraud and human trafficking.

This proposal is problematic, not only because DNA testing is unreliable and vulnerable to hacking, it is also an invasion of privacy and flies in the face of guidelines from the United Nations’ refugee agency.

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