Category: Featured

Hundred dollar bills rolled up in a pill bottle

Reasonable Pricing Clauses: A First Step Toward Ensuring Taxpayers a Fair Return on their Public R&D Investment

The Petrie-Flom Center Staff Leave a comment

By Nikhil Chaudhry and Reshma Ramachandran

Earlier this month, the Department of Health and Human Services announced that it had successfully included a reasonable pricing provision in a $326M investment contract with Regeneron for development of a next generation monoclonal antibody therapy for COVID-19. This was the first time the Biden Administration had included such a provision as part of its research funding agreements with the private sector, demonstrating that it is indeed possible for the federal government to negotiate deals with pharmaceutical companies that ensure that products developed with public dollars are priced comparably to the global market.

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Hand with a red napkin washes the chalk board.

A European Cancer Survivors’ Right to be Forgotten?

Hannah van Kolfschooten Leave a comment

By Hannah van Kolfschooten and Mirko Faccioli

There are currently over 12 million cancer survivors in Europe. Due to improving cancer screening methods and medical treatment, this number is expected to grow every year. Former cancer patients often face multiple forms of discrimination throughout their lives. Many commercial companies make long-term cancer survivors “pay twice” – while having similar life expectancies as their peers, they are denied access to key services because of their former cancer status.

To combat this unfair practice, some European countries are establishing a “cancer survivors’ right to be forgotten,” also referred to as the “oncological right to be forgotten.” Italy’s parliament just passed a law to establish the right. Patients’ rights organizations and EU institutions are pushing for a “European cancer survivors’ right to be forgotten.” This post outlines the purpose of such a right and flags potential challenges in its adoption.

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Puebla, Mexico - September 28, 2020: With green scarves, members of feminist collectives demonstrate in the streets of the Historic Center of Puebla to demand the legalization of abortion.

Sex Equality in #SeptiembreVerde: Examining the Mexican Supreme Court’s Abortion Decriminalization Decision

Joelle Boxer Leave a comment

By Joelle Boxer

Earlier this month, Mexico’s Supreme Court issued a ruling decriminalizing abortion nationwide, setting a powerful example in the global trend of abortion law liberalization, including on the grounds of sex equality.

Hailed as “incredible” by reproductive justice advocates, the decision will be most impactful in the 20 Mexican states where local laws still criminalize abortion, potentially removing access barriers for more than 42 million women.

This article will explain the origins of the case, what the decision holds, and what it says about sex equality.

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Cover image of Ashley Shew's book, Against Technoableism.

Symposium Introduction: Addressing Technoableism: Reforming Infrastructure and Disability Representation

The Petrie-Flom Center Staff Leave a comment

By Ashley Shew

Far too often, when people write and talk about technology and disability, stories are deeply shaped by ableism. Often when devices are painted as “solving the problem of disability” or “empowering disabled people,” they suggest that being disabled is itself a problem, and that people should try to be as nondisabled as possible. But pretending to be nondisabled is not a great way to live — to be in hiding or denial, to not give your body and mind the rest they deserve, to hurt yourself trying to live up to expectations and infrastructure sometimes literally designed to keep you out. Technology itself gets painted as heroic and important — and, please, investors, throw more money at the tech industry — when any disability is mentioned. Disability is often appealed to as a justification for technological development, and as a moral imperative toward investment in technological research. This is technoableism as I describe it in my book, Against Technoableism: Rethinking Who Needs Improvement. 

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View of runners crossing Verrazano Bridge at the start of NY City Marathon

What the New York City Marathon Can Teach Us About Equitable Access to Vaccines

The Petrie-Flom Center Staff Leave a comment

By Ana Santos Rutschman

What can the New York City Marathon experience teach those reflecting on ways to increase equity in the transnational allocation of scarce vaccine doses?

Quite a lot, it turns out. I explore this analogy in a recently published article in the Journal of Law, Medicine and Ethics (JLME), Increasing Equity in the Transnational Allocation of Vaccines Against Emerging Pathogens: A Multi-Modal Approach.

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SACRAMENTO, CA, U.S.A. - OCTOBER 9, 2021: A mother and child march with Proud Mom and Trans Rights are Human Rights signs during the National Trans Visibility March.

Protecting Trans Children: Scientific Uncertainty and Legal Debates Over Child Custody and Access to Care

The Petrie-Flom Center Staff Leave a comment

By Marie-Amélie George

A tweet turned Luna Younger’s personal struggle into a national controversy. Using 148 characters, Texas Governor Greg Abbott announced that the Texas Attorney General’s Office and the Texas Department of Family and Protective Services would be investigating the seven-year-old’s family. Prompting his declaration was a jury’s award of custody to Luna’s mother, Anne Georgulas, a pediatrician who supported Luna’s gender transition. A year before the case made its way into court, Luna had asked her parents to call her Luna, rather than her (traditionally male) legal name, to reflect her gender identity. That same year, a therapist diagnosed Luna with gender dysphoria, which is distress from the mismatch between a person’s assigned sex at birth and their gender identity. As a result, medical professionals recommended that Luna be referred to as “she” and be allowed to wear the feminine clothing and keep the long hair that she preferred. Luna’s father, Jeffrey Younger, registered his objection to Luna’s gender identity by shaving her head, even as he allowed Luna’s twin brother to maintain his locks. Georgulas petitioned for an order prohibiting her ex-husband from “engaging in non-affirming behavior and/or taking Luna outside the home as [her birth name], or allowing others to do so.” Jeffrey Younger counterclaimed for sole legal custody.

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Washington, DC, USA - December 1, 2021: Abortion rights rally at the Supreme Court, Jackson Women's Health v. Dobbs.

Biological Determinism, Scientific Uncertainty, and Reproductive Rights

The Petrie-Flom Center Staff Leave a comment

By Mary Ziegler

As Joanna Wuest writes, the role played by science in the LGBTQ+ movement “is at once a celebratory and cautionary story.” Something similar could be said of struggles over reproductive rights in the half century since the Supreme Court decided Roe v. Wade.

Today, after decades of staying on the sidelines, physicians have once again been at the forefront of struggles over abortion, launching a ballot initiative in Ohio, bringing lawsuits, and speaking against state criminal bans. Physicians’ investment in the struggle — and the scientific arguments they bring to bear — seem like a possible turning point in future struggles over reproductive rights and justice. After all, medical professionals have both special expertise and political capital that could make a difference at a time when disapproval of abortion bans is already high.

But history suggests that arguments based on science have played a far messier role in struggles over reproductive rights. As often as scientific evidence has advanced reproductive rights, abortion foes have used claims about scientific uncertainty to justify new restrictions — and have harnessed claims of biological difference to assert that there is no connection between sex equality and abortion.

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MONTREAL, CANADA -16 AUG 2015- The annual Fierte Montreal parade took place on August 16, 2015 on Boulevard Rene Levesque in Central Montreal. It is the largest Gay Pride in the Francophone world.

“Born This Way,” LGBTQ+ Rights, and the Politics of Uncertainty

The Petrie-Flom Center Staff Leave a comment

By Joanna Wuest

“Medical uncertainty” is no straightforward matter when it comes to LGBTQ+ health and civil rights. Take for instance the 11th Circuit Court of Appeals 2020 decision striking down a pair of municipal ordinances in Florida that had banned so-called “conversion therapy” for minors (contemporary psychology’s preferred nomenclature is “sexual orientation and gender identity change efforts”). In an enormous blow to the evidence-based notion that such change efforts are harmful — they are indeed responsible for much trauma and death — two Trump-appointed judges declared that the science of sexual orientation and gender identity was much too uncertain to justify the bans. Gesturing to the American Psychiatric Association’s (APA) renowned 1973 removal of homosexuality from its list of disorders, the judges explained that “it is not uncommon for professional organizations to do an about-face in response to new evidence or new attitudes.” Ergo, because the APA had changed its mind once fifty years ago, it may just as easily reverse itself again. According to this view, we may one day wake up to find that mental health professionals have reclassified queerness as a malady to be cured rather than a sense of self to be embraced and protected by law.

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Participants listening to lecture in lecture hall.

A Categorical No to Categorical Accommodation Denials Related to COVID-19?

Katherine Macfarlane Leave a comment

By Katherine Macfarlane and Irina Manta

Since fall 2021, when most colleges and universities reopened their campuses to in-person activities, it has become increasingly difficult for faculty and students with disabilities to obtain reasonable accommodations to teach or attend class remotely. Remote accommodations were granted freely during the first year of the COVID-19 pandemic, but in 2021, the in-person aspect of teaching and learning was suddenly deemed essential, and at many institutions, remote classes came to an end. Despite federal disability law’s requirement that each reasonable accommodation request be assessed individually, faculty and students alike were met with bright-line policies that remote teaching and learning were out of the question.

The language and logic used to deny these accommodations at universities across the country was suspiciously similar. We wondered to ourselves whether a memo had been circulated instructing universities about which magic words to employ to deny each accommodation request. But no matter what words are used, across-the-board policies that do not contemplate accommodation-based exceptions and fail to assess accommodation requests on an individual basis do not comply with federal disability law. A recent federal case brought by a high-risk professor against his university employer has recognized these well-settled principles and highlighted the problem with formulaic denials.

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Dating app or site in mobile phone screen. Woman lies on sofa swiping and liking profiles on relationship site or application. Single woman using smartphone to find love, partner.

A Good Man is Hard to Find: Egg Freezing and the ‘Mating Gap’

The Petrie-Flom Center Staff Leave a comment

By Karey Harwood

For as long as I have been thinking and writing about egg freezing, its characterization as “a technological solution to a social problem” has adumbrated a core criticism: egg freezing falls short because there is a deeper problem it doesn’t solve. Egg freezing may help the individual woman who can afford it, yes, but not much more. The deeper problem is generally assumed to be workplace norms molded around men’s life cycle. Pushing hard to advance one’s career during one’s 20s and 30s does not cost men the opportunity to father children, primarily because their fertility does not decline precipitously after age 35. In addition, stay-at-home wives have historically played a supportive role in freeing up men to focus on work. By contrast, women have a more limited window of fertility and are not as likely to have a stay-at-home partner who can take primary responsibility for childrearing.

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