Human genome editing and the identity politics of genetic disability

Boardman, Felicity K.

doi:10.1007/s12687-019-00437-4

Cited by 19 publications

(9 citation statements)

References 32 publications

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“…This belief is quite common and has been previously reported in the academic literature (Soniewicka 2015). Indeed, several papers have highlighted that using GGE to prevent new children from suffering from some concrete conditions could provoke changes in the public profiles of those conditions, causing emotional harm to those who suffer from conditions that the wider society prefers to avoid (Boardman 2019;Barter et al 2017), and reducing the availability of community support (The Nuffield Council on Bioethics 2018; Boardman and Hale 2018). This second argument is somehow reinforced by a third argument, which is grounded in societal interest that "the majority of people with genetic disabilities feel that it would be a loss to society to have fewer people with their particular condition coming into the world" (Boardman and Hale 2018).…”

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confidence: 89%

“…Is the germline gene editing (GEE) of embryos with disabling conditions ethically acceptable or even a moral obligation, as Savulescu et al (2015) and Savulescu and Singer (2019), respectively, have argued? This challenging issue was addressed in the editorial authored by Boardman (2019). According to her, we cannot provide a fair general answer to this question without considering the opinions of people who suffer from these conditions and thinking about the consequences that such policies would have.…”

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confidence: 99%

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Gene editing and disabled people: a response to Felicity Boardman

Beriain

2020

J Community Genet

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Is the germline gene editing (GEE) of embryos with disabling conditions a moral obligation? According to a recent editorial by F. Broadmann, there are strong reasons to hold the opposite, since "such a focus on the benefit to individual embryos is to overlook the broader societal changes that genome editing will signal, as well as the potential negative impacts on existing persons with genetic conditions". This paper is aimed at rebuking these arguments by invoking the human dignity principle.

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confidence: 89%

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confidence: 99%

Gene editing and disabled people: a response to Felicity Boardman

Beriain

2020

J Community Genet

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“…Despite their potential for different diseases [ 14 , 15 ], there are still emerging issues surrounding the safety and effectiveness of GT, including early failures [ 1 ], outcomes such as death [ 16 ], late-onset T-cell leukemia [ 17 ], and brain and spinal cord tumors [ 18 ]. Due to possible non-specific off-target genome changes, insertional mutagenesis with integrating vectors, or immune response to product components, participants in trials with genome editing-based GT products may experience unpredictable and delayed adverse events (AEs) [ 8 , 19 ].…”

Section: Introductionmentioning

confidence: 99%

Inadequate reporting quality of registered genome editing trials: an observational study

Jurić

Zlatin

Marušić

2022

BMC Med Res Methodol

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Background To assess registration completeness and safety data of trials on human genome editing (HGE) reported in primary registries and published in journals, as HGE has safety and ethical problems, including the risk of undesirable and unpredictable outcomes. Registration transparency has not been evaluated for clinical trials using these novel and revolutionary techniques in human participants. Methods Observational study of trials involving engineered site-specific nucleases and long-term follow-up observations, identified from the WHO ICTRP HGE Registry in November 2020 and two comprehensive reviews published in the same year. Registration and adverse events (AEs) information were collected from public registries and matching publications. Published data were extracted in May 2021. Results Among 81 eligible trials, most were recruiting (51.9%) phase 1 trials (45.7%). Five trials were withdrawn. Most trials investigated CAR T cells therapies (45.7%) and used CRISPR/Cas9 (35.8%) ex vivo (88.9%). Among 12 trials with protocols both registered and published, eligibility criteria, sample size, and secondary outcome measures were consistently reported for less than a half. Three trials posted results in ClinicalTrials.gov, and one reported serious AEs. Conclusions Incomplete registration and published data give emphasis to the need to increase the transparency of HGE trials. Further improvements in registration requirements, including phase 1 trials, and a more controlled publication procedure, are needed to augment the implementation of this promising technology.

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“…These include, for example, arguments that the practice of prenatal testing invariably judges certain disabled lives to be not worthy or less worthy of living or that its effect, regardless of questions of judgment, is the prevention of certain people with disabilities from coming into being. 1 Importantly, calls for greater attention to the complexity of disability as well as calls for greater incorporation of the experiential testimony of various disability communities have for many years now also become increasingly common from inside the practice of prenatal genetic counseling (Farrelly et al 2012;Sanborn and Patterson 2014;Madeo et al 2011;Gould et al 2019;Boardman 2020). Whether coming from inside or outside, these calls often assume that genetic counselors' responsibilities to disability communities revolve around dialogue, understanding, and representation.…”

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confidence: 99%