Personhood - Bill of Health

What the Law and Bioethics Tell Us About Synthetic Human Embryos

October 13, 2023October 13, 2023 Barbara Pfeffer Billauer Leave a comment

By Barbara Pfeffer Billauer

A synthetic embryo can now be constructed from very early pre-embryonic cells – without the need for an egg or sperm. These were initially created in mice. In April, researchers in China published about their creation of synthetic monkey embryos. In June, it was reported that the first synthetic human models were apparently created. This development throws a moral monkey-wrench into the current moratoria on embryonic research after 14 days. But there are more problems ahead.

Open Science and Its Enemies: Policy Initiatives in South Africa

October 10, 2023October 10, 2023 Donrich Thaldar Leave a comment

By Donrich Thaldar

Within South Africa’s science policy landscape, two recent proposals, the Draft National Open Science Policy and the Draft National Policy on Data and Cloud, highlight an ideological struggle between individual freedom and central control by the state.

This article discusses both of these proposals, the strengths and weaknesses of their approaches, and their concordance with broader social and political goals in South Africa.

friends playing console video games. controller in hands closeup. neon lights.

Videogame Sanity Systems and Mad Representation

October 3, 2023October 3, 2023 The Petrie-Flom Center Staff Leave a comment

By Alice Fox

Technological artifacts do not exist in a vacuum: they bear the undeniable markings of human histories, politics, blind spots, and biases – for better and worse. Consider, for example, the video game: everything in a video game must be created, decided upon, and often negotiated in a dynamic and lively way.

As I have written elsewhere, video games can directly embody and reproduce harmful stereotypes and misconceptions, while neatly packaging these dispositions as “the way things are” in the videogame world. Video games can be a powerful source and foundation of “knowledge about the world” to which players are exposed – especially when games are played by younger people who may not have had exposure to a variety of different life experiences, people, and ways of knowing to recognize and “inoculate” themselves against problematic positions in a video game. If these flat, one-dimensional depictions are players’ first and frequent encounters with differences in race, gender, sexuality, and ability, these stereotypes and ignorant depictions can become incredibly sticky and difficult to undo. And unlike scientific experiments in mis/disinformation studies, video games rarely provide a debriefing session after the game ends!

line drawing of computers, tablets, and televisions.

Autistic Screen Time: Swipe Left on Stigma

September 26, 2023September 26, 2023 The Petrie-Flom Center Staff Leave a comment

By Maxfield Sparrow

I am an autistic person who has been using the internet as a social prosthetic device since 1983. I was born in 1967 and began therapy in 1972, so the iPad didn’t exist and the only screen time parents worried about was the five channels of broadcast television available twenty hours a day. TV was fine, but my real passion was books. I was hyperlexic and from a very early age I had an unquenchable thirst for written language. My obsession with reading was considered pathological, and adults took my books away to try to force me to socialize with other children instead.

It didn’t work. But it is sadly common that those of us with developmental disabilities are held to higher standards than everyone else. As children, once we are identified, everything about us is scrutinized. Well-meaning adults, fearing for our future, hold us to higher standards of everything from politeness to academic discipline to the age-appropriateness of our interests to the ways we move through the world. We’re not allowed to “get away with” the things non-disabled kids do every day.

UN United Nations general assembly building with world flags flying in front - First Avenue, New York City, NY, USA

Disability Participation and Empowerment in the Context of Climate Action: A Human Rights Obligation

July 21, 2023July 21, 2023 The Petrie-Flom Center Staff Leave a comment

By Elisavet Athanasia Alexiadou

States have a human rights obligation to promote the full, meaningful, and informed participation of persons with disabilities in the context of policy-making and decision-making processes about climate change.

This essay seeks to explain the basis for this obligation, outline its scope, and elucidate how states can ensure its fulfillment.

Diverse individuals having conference video call on tv screen monitor in meeting room.

Climate Resilience Planning: A Life-Saving Entry Point for Incorporating Disability Voices into Policy

July 19, 2023July 19, 2023 The Petrie-Flom Center Staff Leave a comment

By Rafaello Adler-Abramo

Incorporating disability issues into general resilience planning is not only a life-saving necessity, but also a timely opportunity for broader disability inclusion.

Resilience planning is currently expanding and often well-funded. It is expected to vary by locale and populations, so differing needs are assumed. Additionally, much resilience planning is being developed de novo, possibly allowing easier incorporation of disability needs in primary planning, rather than being relegated to “special needs” addenda. This strategy may represent a plausible on-ramp for mainstream incorporation of Disability needs and knowledge.

Recently, I successfully advocated for the incorporation of persons with disabilities’ (PWD) needs into a Massachusetts state-facilitated municipal resilience planning program, in time for their five-year update. While planners’ guidance previously urged attention to needs of numerous groups identified as experiencing heightened vulnerability, PWDs’ specific needs had not yet been included.

Giant Sea Wall, Jakarta, Indonesia - August 28 2021: A four meters wall built to prevent sea water comes in the inner land due to sea level rise. The fastest sinking city. (Masjid Tenggelam)

Examining the Climate Change-Migration Nexus from a Disability Lens

July 18, 2023July 18, 2023 The Petrie-Flom Center Staff Leave a comment

By Divya Goyal

Growing interest in recognizing and promoting migration as a form of climate adaptation risks exacerbating existing inequalities and generating new ones for disabled people.

Scholars, policymakers, and advocates in this field need to pay greater attention to the impact of climate-induced migration on disabled people, document the experiences of disabled people with climate-induced migration and displacement — with a particular focus on their vulnerabilities and capabilities — and deliberate on strategies to build the adaptive capacity and resilience of disabled people.

small person standing with megaphone speaking toward an ear with a red "x" over it.

Beyond Vulnerability: Disability, Epistemic Agency, and Climate Action

July 17, 2023July 17, 2023 The Petrie-Flom Center Staff Leave a comment

By Sarah Bell

When considered in climate policy, disabled people are typically homogenized as climate “victims;” a framing that does little to address the social or political conditions that create these circumstances or to recognize the potential contributions of disabled people as knowledgeable agents of change.

This piece highlights the failure to recognize the knowledges of disabled people as a form of epistemic injustice, whereby the capacity of disabled people as knowers or “epistemic agents” that produce, use and/or transmit knowledge is repeatedly misrecognized or undermined.

rendering of luminous DNA with gene being removed with forceps.

Bioethics Experts vs Ordinary South Africans on the Governance of Human Genome Editing

June 28, 2023June 28, 2023 Donrich Thaldar Leave a comment

By Donrich Thaldar

On the issue of human genome editing (HGE), attitudes between bioethics scholars and the general public diverge, as highlighted by my team’s findings from a recent deliberative public engagement study.

In the study, which assessed views on heritable HGE among South Africans, participants adopted a pragmatic risk-benefit approach to specific applications of heritable HGE. This rational pragmatism of the study participants was informed by values such as improving quality of life, equality and (universal) access to healthcare, moral autonomy, and innovation. By contrast, we might characterize bioethics experts as raising principled objections to heritable HGE as a technology, such as Jürgen Habermas’s articulation of the “right” of the prospective child to an “unaltered genome.” (Not one study participant relied on this objection during the more than 20 hours of deliberations.)

Surgeon and anesthetist doctor ER team with medical clinic room background.

On Experiencing IBD as a Woman

June 7, 2023June 7, 2023 Amalia Sweet Leave a comment

By Amalia Sweet

At the end of last summer I stopped eating. It wasn’t that I wasn’t hungry — I was, constantly — but rather that pretty much everything I tried to put in my stomach triggered excruciating abdominal pain.

While still in Chicago where I was working toward my master’s degree, I went to University Health Services. When tests revealed I was anemic but free of ulcers and Celiac disease, they suggested I work to reduce my stress and follow up with a gastroenterologist when I returned home to Boston later that month.

I called every medical practice I could think of in the greater Boston area and no one had availability sooner than four months out. Without a primary care physician and desperate for a diagnosis, I went to the ER. In spite of my anemia and the fact that I had lost a scary amount of weight in a short period of time, the ER refused to provide a prioritized referral and told me my symptoms were a product of me being sedentary when in fact I was sedentary because of my symptoms.

Category: Personhood