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Eugenics, Disability, and Bioethics
Published in Joel Michael Reynolds, Christine Wieseler, The Disability Bioethics Reader, 2022
Despite having peaked in worldwide influence approximately 100 years ago and having few unbridled advocates since 1945, eugenics continues to serve as a touchstone for a number of core debates and issues within disability bioethics today. Eugenics is both a set of ideas and a historical social movement anchored in the thought that we should use scientific knowledge and technology to selectively direct the traits of future generations of people. In short, the overarching aim of eugenics is to bring about intergenerational human improvement. As a project that takes itself to be ameliorative, to make things better, eugenics rests on a distinction between some notion of better and worse traits and, seemingly, better and worse sorts of people.
Philosophical Basis for Moral Analysis
Published in Howard Winet, Ethics for Bioengineering Scientists, 2021
Eugenics took two main forms—positive and negative. Positive eugenics focused on policies that would encourage carriers of desirable traits to reproduce more. Negative eugenics focused on policies that would discourage carriers of undesirable traits from reproducing at all. The movement was rather popular prior to WWII and resulted in the passage in the United States of legislation at the federal level to reduce immigration of “undesirables” and at the state level to restrict their reproduction. In some 15 states, this included nonvoluntary sterilization (Cohen 2017). One of the conditions targeted as undesirable in all legislation was “feeblemindedness” (the range of definitions for this condition was so wide that it included genetic, infectious, and traumatic causes). Since the “gene” was not defined by science in general until after 1900, it was difficult for early eugenicists to differentiate genetic from environmental causes of a given condition.
Forced sterilizations
Published in Irehobhude O. Iyioha, Women’s Health and the Limits of Law, 2019
In making these and related arguments central to this chapter, the discussion continues with an overview of some of the issues arising from the problem of forced and involuntary sterilizations and its connections with the history of eugenics.
Public Engagement in Shaping Bioethics Policy: Reasons for Skepticism
Published in The American Journal of Bioethics, 2023
Rosamond Rhodes, Gary Ostertag
Perhaps because of its historical association with the eugenics movement, genetics policy makers tend to be afraid of being branded as unethical. Hence, some genetics policies are more paternalistic and less transparent than policies and practices in other areas of medicine. Starting with the Wilson and Jungner (1968) criteria limiting genetic testing to conditions that are treatable (i.e., actionable), genetics leaders have emphasized the importance of protecting people from foreseeable harms. Protective policies and positions include strict limits on testing children for adult-onset diseases and disclosure of incidental findings. In addition, authors such as Doukas and Berg (2001) have advocated breaching confidentiality in favor of protecting family decision-making interests, and Grady et al. (2015) have advocated limitations on scientific research so as to “protect” group interests. In sum, genetic policies tend to focus unduly on protecting people from unlikely and unproven possibilities of harm.
Queering the Desire to Die: Access Intimacy as Worldmaking for Survival
Published in Journal of Homosexuality, 2023
Compulsory vivation is not only opposed to queerness but also all reproduction by nonwhite and non-able bodyminds. Przybylo (2019) explains that heteronormativity “categorize[s] people into sexual personas have historically functioned as systems of colonial imposition underwritten by desires to keep heterosexuality tethered to whiteness, normality, and ability” (pp. 5–6). Overlapping disability justice work and queer theory thus illuminates how Black people are targeted for epistemic and physical violence at the hands of psychiatry because these people are framed as hypersexual threats to normative white society, while simultaneously being framed as inherently less rational and thus “naturally” insane (Gonder, 2004). Eugenic models resulting in forced sterilization and over-medication, among other practices, demonstrate the biomedical system’s entrenchment in racist ideologies or survival and reproduction (Washington, 2006).
The Prevention of Thalassemia Revisited: A Historical and Ethical Perspective by the Thalassemia International Federation
Published in Hemoglobin, 2021
Michael Angastiniotis, Mary Petrou, Dimitrios Loukopoulos, Bernadette Modell, Dimitrios Farmakis, Panos Englezos, Androulla Eleftheriou
Therefore, offering people the possibility to choose and even prevent the birth of affected children, remains a less painful alternative to experiencing multiple medical complications and early death. For such countries, limiting affected births remains a policy that may be regarded as justified. The concept of eugenics, often cited as a criticism of the prevention of any genetic disease, cannot be sustained when the overall picture of severe and lifelong suffering is understood. When Galton first used this term [48] he had in mind the ‘the improvement of the inborn qualities or stock of the human population.’ In medical genetics, the aim of hereditary disease programs is to offer improvement in the lives of patients and their families, along with measures to support those affected [49].