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Announcing The Journal of Philosophy of Disability 

The Journal of Philosophy of Disability (JPD) is a new journal devoted to the philosophical study of disability.

Disability is central to human life. As the slogan from disability studies goes: “disability is everywhere, once you know how to look for it.” After a steady stream of scholarship from the 1990s onward, work in the field of philosophy of disability has expanded exponentially. Despite this explosion, there has never been a peer-reviewed journal devoted to scholarship in the field of philosophy of disability. Until now.

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The Disparate Impact of COVID-19 on Individuals with Intellectual and Developmental Disabilities

By James W. Lytle

Katrina Jirik’s compelling post on the dangers posed to people with disabilities if care is rationed during the COVID-19 pandemic powerfully characterizes discriminatory allocation criteria as a form of “updated eugenic thought” that cannot be reconciled with the Americans with Disabilities Act and other anti-discrimination statutes.

I worry, however, that persons with disabilities and other vulnerable populations face an even graver threat:  policymakers may unintentionally adopt policies that neglect to consider the unique needs of persons with disabilities and inadvertently place them at much greater risk.

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New technologies are empowering persons with disabilities. But are they Assistive?

Consumer tech has reduced daily friction for countless individuals, making it easier to control households, shop for groceries, and connect with loved ones. These technologies can be especially empowering for persons with disabilities, increasing accessibility and resolving frustrations of everyday activities. You may have seen related news in press releases and popular headlines: “Alexa is a Revelation to the Blind,” “Disabled Americans Deserve the Benefit of Self-Driving Cars,” “Amazon Alexa Can Help People With Autism Do More On Their Own.”

But are these technologies assistive? Disability nonprofit Understood.org defines assistive technology as “any device, software, or equipment that helps people work around their challenges.” Classifying a device or software as assistive technology (and/or related regulatory labels) can lead to insurance coverage and tax incentives. It can change how devices are viewed in healthcare settings and impact product research and design. In this article, we speak with bioethicist and disability scholar Dr. Joseph Stramondo about how to define assistive technologies in today’s consumer tech revolution. 

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a home hub featuring icons of all the tasks it can assist with in a thinking cloud

Exploring Elder Care Robotics: Voice Assistants and Home Hubs

This article is part of a four-part series that researches how robotics are being developed for aging care and investigates their ethical implications. In our first article, we explored emotional companion robots, which soothe and comfort patients experiencing loneliness, depression, or diseases such as Alzheimer’s. Today, we look at voice assistants and home hubs—robots designed to coordinate and simplify daily tasks around the house. 

What are Voice Assistants and Home Hubs?

Unlike other robots in this series, you are probably familiar with voice assistants and home hubs. These robots, which include Amazon Echo, Google Home, Apple Siri, Samsung Ballie, and Nest, respond to human commands (voice, motion, or input) to complete tasks like preheating the oven, playing a podcast, or refilling a prescription. Several devices also incorporate artificial intelligence (AI) to learn household patterns and anticipate needs.  However, unlike social robots (covered later in this series), voice assistants do not proactively engage with users unless programmed or commanded.   Read More

Uncertainty and Immutability: Arguments for Genetic Nondiscrimination

By Kaitlyn Dowling, based on research by the Cyberlaw Clinic at the Berkman Klein Center for Internet & Society

Illustration of a gavel made out of a DNA helixIn a year-long series on Bill of Health, we’ll be exploring the legal scholarship on genetic non- discrimination. We’ll talk more about GINA and state laws protecting citizens from genetic discrimination. We hope these posts help shed light on this complex and ever-more-relevant area for legal scholars, policymakers, and the public at large. Read the previous posts in the series.

We’ve covered the history of genetic non-discrimination legislation and the potential risks of being discriminated against in housing and lending and education based on genetic data. Those risks are clear: there are many reasons why a bank, landlord, or school might want to take a person’s genetic information (and, thus, their potential future health) into account. Let’s take a deeper dive into two broad arguments in favor of strong privacy protections for genetic information and their consequences.

 

Uncertainty

A common policy argument in favor of genetic non-discrimination legislation is that genetic discrimination is unjust because the outcomes implicated by one’s genes may never manifest. In 2001, President George W. Bush stated that “[g]enetic discrimination is unfair to workers and their families. It is unjustified – among other reasons, because it involves little more than medical speculation. A genetic predisposition toward cancer or heart disease does not mean the condition will develop.” Read More

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New TWIHL with Melissa Keyes, Heather Walter-McCabe, Stacey Tovino, & Ruqaiijah Yearby

By Nicolas Terry

This episode was recorded at our recent conference entitled Getting Real About Health Care for All. An outstanding panel at the conference was asked the question, “Can We Make Health Care Inclusive?” To answer that question we welcomed Melissa Keyes, Heather Walter-McCabe, Stacey Tovino, and Ruqaiijah Yearby. They approached the question from the perspective of those commonly excluded from quality healthcare; those along the capacity spectrum, members of the LGBTQ communities, those suffering from mental health or substance use disorders, and those requiring home or facility-based long-term care.

The Week in Health Law Podcast from Nicolas Terry is a commuting-length discussion about some of the more thorny issues in health law and policy. Subscribe at Apple Podcasts or Google Play, listen at Stitcher Radio, SpotifyTunein or Podbean.

Show notes and more are at TWIHL.com. If you have comments, an idea for a show or a topic to discuss you can find me on Twitter @nicolasterry or @WeekInHealthLaw.

Subscribe to TWIHL here!

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Matthew Cortland on “The Week in Health Law” Podcast

By Nicolas Terry

This week’s guest is Matthew Cortland, a patient and health care rights advocate from Massachusetts. He received his graduate training in public health from Boston University and earned a J.D. from George Mason University School of Law. He is disabled and chronically ill, a superbly effective lawyer, writer, and speaker as well as a well-known health care and disability rights activist.

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Group of people of various ages and ethnicities sitting in a circle talking. At least one of the people is in a wheelchair.

Rethinking Inclusivity in Precision Medicine Research: The Disability Experience and Barriers to Participation

By Maya Sabatello and Paul S. Appelbaum

One of the most important aspects of precision medicine research is its focus on inclusion of diverse groups. The reality is that without cohort diversity, it will be impossible for precision medicine research to deliver on its promise to provide prevention and therapeutic options that are tailored to each individual’s genetic makeup, environment, and lifestyle choices across diverse groups. And, as the scientific community, including the national All of Us Research Program, increasingly has come to realize, for precision medicine to reduce—rather than magnify—health disparities, it is critical to ensure that historically marginalized communities are included in this research endeavor. Read More

A yellow dentist chair, in an empty dental office.

Barriers to Dental Care Abound for Individuals with Developmental Disabilities

In early May, a New York Times article profiled the N.Y.U. College of Dentistry’s Oral Health Center for People with Disabilities. As the Times article describes, the new facility establishes an important point of service for people with developmental disabilities in New York City. It also creates a much-needed pipeline for dentists skilled in treating this special population. Read More

Govind persad at the podium

When All You Have is a DALY, Everything Looks Like Disease

Recently the Petrie-Flom Center’s annual conference brought together medical experts, bioethics scholars, and disability advocates to rethink how medical systems and public health policies can engage with disability.

During the many fascinating panels at “Beyond Disadvantage: Disability, Law, and Bioethics” one idea that sparked some debate was whether we should use quality/disability adjusted life years (QALY/DALY) to set priorities for who gets access to healthcare resources. Prof. Govind Persad, a bioethicist at Johns Hopkins and blogger for Bill of Health, suggested in his presentation that we should dramatically reduce the role of such utilitarian calculations in priority setting, instead focusing on the genesis of the disadvantage.

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