By Hannah Rahim
New technologies are increasing the accessibility of polygenic embryo screening, which can assess the likelihood of an embryo developing polygenic diseases (e.g., diabetes, schizophrenia) or provide insight into certain polygenic traits (e.g., height, intelligence). This procedure has many complex clinical, social, and ethical implications, but is currently unregulated in the U.S.
By Hannah Rahim
The regulation of medical assistance in dying (MAID) is drastically different between the U.S. and Canada. Comparing the hasty liberalization of MAID in Canada with the more wary approach of the U.S. can yield important learnings for both countries.
By Pratima Gurung, Penelope J.S. Stein, and Michael Ashley Stein
The climate crisis disproportionately impacts marginalized populations experiencing multilayered and intersecting oppression, such as Indigenous Peoples with disabilities. To achieve climate justice, it is imperative to understand how multiple layers of oppression — arising from forces that include ableism, colonialism, patriarchy, and capitalism — interact and cause distinctive forms of multiple and intersectional discrimination. Only by understanding these forces can we develop effective, inclusive climate solutions.
By Hannah Rahim
Luck egalitarianism is a theory of political philosophy that provides that inequalities resulting from an individual’s informed choices are just and need not be reduced, whereas inequalities resulting from circumstances over which an individual has no control are unjust and should be reduced. The application of luck egalitarianism to health inequalities has some value when allocating health care resources, but it often conceptualizes health too narrowly and risks exacerbating existing unjust disparities. If luck egalitarianism is to be applied in developing health care policy, it must only be used in clearly defined circumstances and with a holistic approach.
By Hannah Rahim
The Americans with Disabilities Act (ADA) prohibits health care organizations that provide services to the public from discriminating against persons with disabilities. Although substance use disorder can be a disability under the ADA, there are limitations in the scope and enforcement of these ADA protections. Further action is needed to prevent discrimination in health care services towards persons with substance use disorder.
By Silvia Serrano Guzmán
On July 4, 2023 the Constitutional Court of Colombia handed down a landmark decision on one of the most difficult dilemmas faced during the COVID-19 pandemic: the rationing of intensive care in situations of scarcity. Although the need for prioritization was a reality almost globally, many countries had no such regulation in place, which frequently led to the adoption of fragmented and discriminatory triage protocols.
The Colombian case reinforces that human rights and public health are not mutually exclusive. Importantly, this is reflected in the Principles and Guidelines on Human Rights & Public Health Emergencies (2023). Though the Principles did not exist during the litigation of the case, they will be of use in similar instances going forward, both for States working to develop human rights-compliant public health measures, as well as for courts reviewing such measures.
By Vincent Joralemon
Psychedelics have a public relations problem, due in part to overzealous promoters, genuine risks, and bad science. But, recent psychedelic legislation sponsored by conservative congressperson Dan Crenshaw shows minds can be changed in this space.
Public perceptions will shape efforts to reclassify, decriminalize, and make psychedelics available for therapeutic use. The most effective way to change peoples’ opinions is to highlight the success stories of those who have tried psychedelics. And, as Crenshaw’s story shows, psychedelic-assisted therapy for post-traumatic stress disorder (PTSD) is a compelling application for precisely those who harbor the most skepticism towards these drugs.
By Sharona Hoffman
Patient-reported outcome measures (PROMs) are questionnaires that patients fill out on tablets or other computers or devices. They ask patients to check boxes in answer to questions about their symptoms, treatment effects, and ability to function physically, emotionally, and socially. They thus may solicit very sensitive information about matters such as anxiety, depression, and sexual satisfaction. To illustrate, a query might be “in the past month, how often did you have a lot of trouble falling asleep,” and the patient is asked to check “never,” “rarely,” “sometimes,” “often,” or “always.”
PROM responses can be used for purposes of clinical care, research, quality improvement, Food and Drug Administration (FDA) approval of drugs and devices, and even insurance reimbursement. For example, insurers hypothetically could decide to decline coverage of particular treatments based on PROM responses indicating that many patients find them to be unhelpful.
I first became interested in patient-reported outcome measures because of an experience my husband had. Andy has Parkinson’s disease, and one of the neurologists he saw asked him to fill out a long questionnaire on a tablet computer before each appointment. This task was difficult for Andy because he had a hand tremor, and it was stressful because Andy worried that he would not have time to complete the survey before his appointment began. Moreover, Andy’s physician never referred to his responses and appeared never to look at them. Upon investigation, I found little to no analysis of PROMs in the legal literature, so Andy and I recently published a law review article about them.
By Joelle Boxer
Last month, California Governor Gavin Newsom signed a package of nine reproductive health care bills, following the passage of fifteen such bills in 2022. While the state should be lauded for its efforts, it has come up short. Recent legislation largely excludes up to 25% of the adult population: Californians with disabilities.
People with disabilities in the U.S. experience wide disparities in accessing reproductive health care, rooted in a long history of oppressive reproductive control. California should take action now to address these disparities and fulfil its goal of becoming a “reproductive freedom state” for all.
This article will examine recent movement on reproductive health care legislation in California, explain its failure to meet the needs of Californians with disabilities, and suggest a path forward in line with principles of disability reproductive justice.
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!