Introduction to the Ethics of Reproductive Genetic Technologies

Keyword(s):  
2021 ◽  
pp. 251484862110249
Author(s):  
Jessica C Barnes ◽  
Jason A Delborne

Innovations in genetics and genomics have been heavily critiqued as technologies that have widely supported the privatization and commodification of natural resources. However, emerging applications of these tools to ecological restoration challenge narratives that cast genetic technoscience as inevitably enrolled in the enactment and extension of neoliberal capitalism. In this paper, we draw on Langdon Winner’s theory of technological politics to suggest that the context in which genetic technologies are developed and deployed matters for their political outcomes. We describe how genetic approaches to the restoration of functionally extinct American chestnut trees—by non-profit organizations, for the restoration of a wild, heritage forest species, and with unconventional intellectual property protections—are challenging precedents in the political economy of plant biotechnology. Through participant observation, interviews with scientists, and historical analysis, we employ the theoretical lens provided by Karl Polanyi’s double movement to describe how the anticipations and agency of the developers of blight-resistant American chestnut trees, combined with chestnut biology and the context of restoration, have thus far resisted key forms of the genetic privatization and commodification of chestnut germplasm. Still, the politics of blight-resistant American chestnut remain incomplete and undetermined; we thus call upon scholars to use the uneven and socially constructed character of both technologies and neoliberalism to help shape this and other applications of genetic technoscience for conservation.


2014 ◽  
Vol 17 (8) ◽  
pp. 668-678 ◽  
Author(s):  
Ellen Otten ◽  
Mirjam Plantinga ◽  
Erwin Birnie ◽  
Marian A. Verkerk ◽  
Anneke M. Lucassen ◽  
...  

Author(s):  
Alexandra Cernat ◽  
Robin Z. Hayeems ◽  
Wendy J. Ungar

AbstractCascade genetic testing is the identification of individuals at risk for a hereditary condition by genetic testing in relatives of people known to possess particular genetic variants. Cascade testing has health system implications, however cascade costs and health effects are not considered in health technology assessments (HTAs) that focus on costs and health consequences in individual patients. Cascade health service use must be better understood to be incorporated in HTA of emerging genetic tests for children. The purpose of this review was to characterise published research related to patterns and costs of cascade health service use by relatives of children with any condition diagnosed through genetic testing. To this end, a scoping literature review was conducted. Citation databases were searched for English-language papers reporting uptake, costs, downstream health service use, or cost-effectiveness of cascade investigations of relatives of children who receive a genetic diagnosis. Included publications were critically appraised, and findings were synthesised. Twenty publications were included. Sixteen had a paediatric proband population; four had a combined paediatric and adult proband population. Uptake of cascade testing varied across diseases, from 37% for cystic fibrosis, 39% to 65% for hypertrophic cardiomyopathy, and 90% for rare monogenic conditions. Two studies evaluated costs. It was concluded that cascade testing in the child-to-parent direction has been reported in a variety of diseases, and that understanding the scope of cascade testing will aid in the design and conduct of HTA of emerging genetic technologies to better inform funding and policy decisions.


Author(s):  
В.В. Лапаева

Правовая политика России в сфере создания и применения генетических технологий в медицине не обеспечивает в должной мере баланс между системой прав человека, гарантирующих защиту его достоинства и охрану здоровья, и свободой научного творчества. Несогласованность этих прав человека проявляется в том, что при отсутствии запретов на исследования с применением технологий наследуемого редактирования генома человека законодательство лишает патентоспособности любые технологии по модификации генетической целостности клеток зародышевой линии человека. Последовательный правовой подход предполагает введение ограничений на возможность геномного редактирования зародышевой линии и запрета на патентование способов такого редактирования, не выходящего за рамки заданных ограничений. При разработке такого похода целесообразно учесть опыт Великобритании. The Russian legal policy in the field of the medicine genetic technologies creation and application does not provide a proper balance between the system of human rights that guarantee the protection of its dignity and health, and the freedom of scientific creativity. The non-coordination of these human rights is manifested in the fact that in the absence of prohibitions on research using technologies of human genome inherited editing, the law deprives patentability of any technology for modifying the genetic integrity of human germline cells. A consistent legal approach involves the restrictions on the possibility of the germ line genomic editing and the prohibition of patenting the methods of such editing, which does not go beyond the given restrictions. It is advisable to take into account the experience of Great Britain.


2021 ◽  
Vol 37 (1) ◽  
pp. 5-20
Author(s):  
K.G. Skryabin ◽  
A.M. Kamionskaya

This study analyzes the current regulatory system for genetic engineering in Russia in terms of expected amendments related to genome editing technology, given that its products - genome-edited crops - have already appeared on the international market. A list of corresponding concepts that require legal rethinking and definition has been compiled. Changes in the model of state regulation of genetic technologies in Russia are proposed: the transition from a process-oriented regulation system to a risk-based system. To assess the risk of public rejection of the products of genetic technology and new biotechnologies, 931 participants of the opinion poll have been selected who underwent an online sociological survey using purposive sample techniques. The obtained results revealed the innovation potential of the Russian society and experts in the novel genetic and digital technologies in agriculture, their attitude to the threat of global hunger and the application of biodegradable materials and biofuels in relation to the circular economy. genetic technologies, GMOs, regulations, opinion poll, Russia The authors thank the staff of Technological platform Biotech2030, Moscow, Russia This paper is part a study that was partially supported by the Russian Foundation for Basic Research (RFBR) (project no. 18-29-14067/18).


2019 ◽  
Vol 201 (16) ◽  
Author(s):  
Kathleen N. McAllister ◽  
Joseph A. Sorg

ABSTRACTThe genusClostridiumis composed of bioproducers, which are important for the industrial production of chemicals, as well as pathogens, which are a significant burden to the patients and on the health care industry. Historically, even though these bacteria are well known and are commonly studied, the genetic technologies to advance our understanding of these microbes have lagged behind other systems. New tools would continue the advancement of our understanding of clostridial physiology. The genetic modification systems available in several clostridia are not as refined as in other organisms and each exhibit their own drawbacks. With the advent of the repurposing of the CRISPR-Cas systems for genetic modification, the tools available for clostridia have improved significantly over the past four years. Several CRISPR-Cas systems such as using wild-type Cas9, Cas9n, dCas9/CRISPR interference (CRISPRi) and a newly studied Cpf1/Cas12a, are reported. These have the potential to greatly advance the study of clostridial species leading to future therapies or the enhanced production of industrially relevant compounds. Here we discuss the details of the CRISPR-Cas systems as well as the advances and current issues in the developed clostridial systems.


2011 ◽  
Vol 39 (1) ◽  
pp. 79-90 ◽  
Author(s):  
Britt M. Rusert ◽  
Charmaine D. M. Royal

Since the first phase of the formal effort to sequence the human genome, geneticists, social scientists and other scholars of race and ethnicity have warned that new genetic technologies and knowledge could have negative social effects, from biologizing racial and ethnic categories to the emergence of dangerous forms of genetic discrimination. Early on in the Human Genome Project (HGP), population geneticists like Luigi Luca Cavalli-Sforza enthusiastically advocated for the collection of DNA samples from global indigenous populations in order to track the history of human ancestry, migration, and languages, while social scientists like Troy Duster insisted that the new genetics was in danger of ushering in insidious practices of eugenics. The Human Genome Diversity Project's 1991 proposal to archive human genetic variation around the world quickly came under intense scrutiny by indigenous peoples and advocacy groups who worried that such measures could exploit indigenous groups as research populations and even resurrect racist taxonomies from the nineteenth century.


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