The Disability Rights Critique of Technologies that Eliminate Human Genetic Variation
By Rosemarie Garland-Thomson,
ELSIhub
| 04. 12. 2023
Photo by Kimberly Farmer on Unsplash
Introduction
The development and use of an expanding range of medical technologies that yield genetic information about embryos and fetuses has raised ethical questions about whether and how this increasingly routine set of practices discriminates against people with disabilities. A conversation in the form of academic articles and public media offers explications and critiques about the social and moral harms human gene editing and prenatal genetic testing and the selective reproduction practices it prompts bring to humanity. These purported harms range from increased social inequity—at the very least—to structural and individual violence—at the very most.
This collection suggests that conversations about these technologies have changed over time and also reflects the varied communities engaged in those conversations over time and across social locations. The collection thus focuses on the health humanities in the broadest sense. This means that the data, evidence, and knowledge it gathers come from the lives of individuals, families, and human communities who live with disabilities and illnesses, not from medical-scientific or clinical data. The stories in the final section of...
Related Articles
By Peter Wehling, Tino Plümecke, and Isabelle Bartram
| 03.26.2025
This article was originally published as “Soziogenomik und polygene Scores” in issue 272 (February 2025) of the German-language journal Gen-ethischer Informationsdienst (GID); translated by the authors.
In mid-November 2024, the British organization Hope not Hate published its investigative research ‘Inside the Eugenics Revival’. In addition to documentating an active international “race research” network, the investigation also brought to light the existence of a US start-up that offers eugenic embryo selection. Heliospect Genomics aims to enable wealthy couples to...
By Dalton Conley, The New York Times | 03.13.2025
Since Francis Galton coined the phrase “nature versus nurture” 150 years ago, the debate about what makes us who we are has dominated the human sciences.
Do genes determine our destiny, as the hereditarians would say? Or do we enter...
By Jamie Ducharme, TIME | 03.06.2025
After struggling for eight years to have a baby, Shannon Petersen and her husband decided to try in vitro fertilization (IVF) in 2022. Their fertility doctor recommended a test that sounded like exactly what they needed. It promised to help...
By Jason Wilson, The Guardian | 03.03.2025
A natalist conference featuring speakers including self-described eugenicists and promoters of race science, apparently including the man behind a previously pseudonymous race-science influencer account, and the founder of a startup offering IQ screening for IVF embryos, will be held at...