Genes

DNA methylation constitutes one of the pillars of epigenetics, relying on covalent bonds for addition and/or removal of chemically distinct marks within the major groove of the double helix. DNA methyltransferases, enzymes which introduce methyl marks, initially evolved in prokaryotes as components of restriction‐modification systems protecting host genomes from bacteriophages and other invading foreign DNA. In early eukaryotic evolution, DNA methyltransferases were horizontally transferred from bacteria into eukaryotes several times and independently co‐opted into epigenetic regulatory systems, primarily via establishing connections (...) with the chromatin environment. While C5‐methylcytosine is the cornerstone of plant and animal epigenetics and has been investigated in much detail, the epigenetic role of other methylated bases is less clear. The recent addition of N4‐methylcytosine of bacterial origin as a metazoan DNA modification highlights the prerequisites for foreign gene co‐option into the host regulatory networks, and challenges the existing paradigms concerning the origin and evolution of eukaryotic regulatory systems. (shrink)

Scholars have long speculated about what a future affected by gene editing technologies might hold. This article enters current debates over the future of gene editing and the place of disability within it. Specifically, I evaluate contemporary utopian thinking about gene editing found in two different schools of thought: transhumanism and critical disability studies, ultimately judging the latter to be richer and more politically promising than the former. If we take it as our goal to protect and promote future people’s (...) autonomy interests, I argue that current political efforts should be directed toward modifying ableist environments rather than employing genetic technologies to avoid disability or enhance capacity. The article concludes by drawing from disability justice scholarship to make the case that the “right to an open future” should be understood as the “right to an accessible future,” one wherein society is “open” to people with diverse genetic traits and capacities. (shrink)

La brevetabilité du vivant suscite d’importantes questions car elle confronte le droit des brevets à certaines de ses limites comme, la non brevetablité des découvertes, l'interdiction d'appropriation du corps humain et la protection de l'intégrité du génome humain. Le présent article identifie ces limites et d'autres problématiques connexes, dans l'attente d'un article de fond plus complet sur le sujet.

Le chemin vers de Nouvelles Humanités passera-t-il par la modification du génome? Si la réponse est encore incertaine, il est évident que le pouvoir des gènes est au coeur de nombreuses interrogations, de peurs et d’espoirs. Nous montrerons que ce pouvoir des gènes, encore appelé « déterminisme génétique » a connu son apogée au milieu du xx e siècle, puis a perdu, avec la description précise des mécanismes moléculaires par lesquels les gènes exercent leurs effets, sa force et sa simplicité. (...) Mais le « siècle du gène » que fut le xx e siècle a laissé sa marque sur les discours concernant les gènes et les génomes, aujourd’hui en décalage avec la vision scientifique. (shrink)

La génétique est une science qui s’est constituée pour l’action, et dont la légitimité s’est largement construite par l’action, dans des contextes appliqués. Chez l’Homme, l’utilité de ce savoir pour l’action fait pourtant de la résistance. Les projets de modification directe de l’ADN par thérapie génétique se révèlent complexes à maîtriser en dehors de quelques situations particulières. Si la quantification a priori de l’effet des gènes sur un caractère humain est impossible, une mesure – l’héritabilité – sème le trouble. Développée (...) par les scientifiques eugénistes, elle est le plus souvent utilisée à tort pour justifier de l’importance des gènes. Elle contribue en outre à diffuser l’idée que les effets biologiques héritables et les effets d’environnement agissent de façon indépendante, simplement cumulative, alors même que tous les résultats de recherches en biologie montrent le contraire. De fait, les identifications actuelles de variants génétiques associés aux caractères complexes chez l’Homme, reposent sur un modèle statistique incarnant cette même idée. Leurs difficultés à prédire les traits morphologiques ou les maladies complexes reflètent largement cette réduction excessive de complexité. Dans ces conditions, non seulement, agir SUR les gènes ne saurait être une stratégie pouvant être qualifiée de « suffisante », mais la possibilité d’agir AVEC les gènes est elle-même extrêmement fragilisée et doit être regardée au cas par cas, avec le souci de conduire des évaluations coûts/bénéfices rigoureuses, tenant compte des nombreuses externalités sociales de la génétique. (shrink)

Existing empirical research often do not explain which concepts about genetics underlie the assumption that genetic information is deemed important for donor-conceived offspring. This study focused on how donor-conceived individuals following anonymous sperm donation give meaning to and make sense of genes and genetics. Analysis is based on focus groups and interviews with adult donor-conceived offspring. Findings suggest that genes are part of their specific context of being donor-conceived but also play a role in daily life. Genes make sense on (...) an individual level and a relational level, both on parent-child as sibling-level. On an individual level they were perceived as (1) a biological starting package, (2) their own unique combination and (3) as a reference point. On a relational level, genes were seen as (1) “person-al”, (2) connecting and (3) locating individuals. This information is essential for those supporting/counseling donor conceived offspring and families as well as for policy-members. (shrink)

This article analyses shifts in metaphors in direct-to-consumer genetic testing, analyzing the websites and select media coverage of the nutrigenetic testing company Sciona (2000–2009) and the personal genome service 23andMe (2006–). Sciona represented genes and communication through the classical metaphor of information; genes coded for disease, and this information was transmitted from the expert company to the consumers. 23andMe represented genes and communication through a new metaphor of big data; genes were digital data or a resource that was browsed, correlated (...) with other data, uploaded and retrieved across lay customers, websites and companies. In terms of understanding health 23andMe tests and research still cast genes as coding for disease to be mitigated by lifestyle change and targeted drugs. However, rendering genes digital data or resources changed their social and economic meaning; genes could be circulated, shared and traded, which legitimized 23andMe’s business model of consumer genetics and private biobanking. (shrink)

This article presents ethnographic material from a London-based group of gene therapists who received the opportunity to trial a device that, its makers claimed, would expedite and improve their cell work. The Vanguard cell processor elicits both enthusiasm and ambivalence from group members, which I seek to understand by examining the group’s current manner of working alongside the device and its purported virtues. I show that cell processing currently involves complex practices of recognition, attention, care, and involvement, which answer to (...) both the liveliness of cells and the experimentality of gene therapy. I read these practices as a well-honed configuration of productive engagements and detachments, which the Vanguard would thoroughly rearticulate. I thus argue that translational gene therapy is a site at which private and academic interests meet, and that translation more generally might be seen as a space where the relational format of science is renegotiated. (shrink)

The EU aspires to utilize the economic advantages of gene-editing technology on one hand and ensure human health and environmental safety on the other. Surrounding the fierce debates over emerging gene-edited plant, the current debate focused on the issue of whether the gene-edited crop should be within or outside the GMO law and its implication for innovation. It should not be forgotten that it is also involved in the complex patentability issues pertaining to the legal interpretation of the patent law. (...) The gene-edited crop is governed by GMO regulations due to its potential risk to human health and environmental safety. But it is heavily patented, as patent regulations ignore its potential risk. This article examines the discrepancy of the gene-edited crop between the existing GMO law and the patent law and reveals the challenges to current EU jurisdiction, including the international trade impediment challenge, the patent monopoly challenge, the market confusion challenge, and the agricultural economy suspension challenge. In the end, this article argues that EU GMO regulations should be bridged with a patent system in facing the regulatory challenges from the gene-edited crop. (shrink)

Biological kin share up to half of their genetic material, including predisposition to disease. Thus, variants of clinical significance identified in each individual’s genome can implicate an exponential number of relatives at potential risk. This has renewed the dilemma over family access to research participant’s genetic results, since prevailing US practices treat these as private, controlled by the individual. These individual-based ethics contrast with the family-based ethics – in which genetic information, privacy, and autonomy are considered to be familial – (...) endorsed in UK genomic medicine and by participants in a multi-method study of US research participants presented here. The dilemma reflects a conflict between US legal and ethical frameworks that privilege “the individual” and exclude “the family” versus actual human genetics that are simultaneously individual and familial. Can human genetics succeed in challenging bioethics’ hegemonic individualism to recognize and place the family at the center of the room where bioethics happens? (shrink)

Anticipatory policy for gene editing requires assessing public opinion about this new technology. Although previous surveys have examined respondents’ views on the moral acceptability of various hypothetical uses of CRISPR, they have not considered whether these scenarios are perceived as plausible. Research in construal level theory indicates that participants make different moral judgments about scenarios seen as likely or near and those seen as unlikely or distant. Therefore, we surveyed a representative sample of 400 Americans and Canadians about both the (...) likelihood and the permissibility of 23 commonly discussed uses of gene editing. Respondents with more knowledge of gene editing generally thought these applications would be more likely within the next 20 years. There was a strong positive relationship between the perceived likelihood and permissibility of most CRISPR applications. Our results suggest that ongoing public engagement efforts for gene editing could be improved by taking its perceived time-frames into account. (shrink)

The increasing importance of computational techniques in post-genomic life science research calls for new forms and combinations of expertise that cut across established disciplinary boundaries between computing and biology. These are most marked in large scale gene sequencing facilities. Here new ways of organising knowledge production, drawing on industrial models, have been perceived as pursuing efficiency and control to the potential detriment of academic autonomy and scientific quality. We explore how these issues are played out in the case of BGI (...) (Beijing Genomics Institute prior to 2008). BGI (in Pinyin, Hua Da Jiyin– Big China Genome) is today the world’s largest centre for gene sequencing research. Semi-detached from traditional academic institutions, BGI has developed distinctive models for organising research and for developing expertise, informed by practices in US Information Technology and Life Science Laboratories, that differ from existing models of interdisciplinary research in academic institutions. (shrink)

Metaphors have been crucial in making genetics and genomics public, from the code and the book of life to genetic scissors and gene surgery. A new field is emerging called “gene drive” – a range of controversial technologies that can potentially be used for the eradication or conservation of animal species. At the same time, metaphors are emerging to talk about the promises and dangers of “gene drive”. In this article we use thematic analysis to examine thirty interviews with gene (...) drive science and communication experts, and stakeholders, focusing on how they talk about their lived experience of metaphor use in the context of gene drive communication, including their struggle to remember salient metaphors and their reflections on which metaphors to use and which to avoid. We discuss the significance of our findings for research and practice of responsible science communication. (shrink)

The 2018 announcement that the world’s first babies had been born following gene editing was unexpected and unanticipated. In this article, we focus on the reaction to the announcement and explore how this revealed implicit and explicit assumptions about the role and responsibilities of scientists and scientific standards. Through analysis of media coverage and public commentary about the birth of the “world’s first,” we identify how the event was constructed as a breach of scientific norms. We begin by identifying the (...) use of an “if true” narrative, which contributed to the meanings of the technology and the births following the initial announcement. We consider two dimensions to the concept of “breach,” as an individual act of transgression and as a rupture of community norms. Finally, we consider the work of the broader scientific community in repairing the damage and their attempts to strengthen its boundaries to prevent future transgressions. (shrink)

This chapter addresses a general question: What is responsible risking? It explores the notion of "responsible risking" as a thick moral concept, and it argues that the notion can be given moral content that could be action-guiding and add an important tool to our moral toolbox. To impose risks responsibly, on this view, is to take on responsibility in a good way. A core part of responsible risking, this chapter argues, is some version of a Forethought Condition. Such a condition (...) requires us to not make decisions or plans such that we could not deliver on our responsibility obligations. This chapter argues that three moral obligations can be derived from descriptive notions of responsibility. They are (1) the control condition, (2) the responsibility to fix condition, and (3) the responsibility to explain condition. The idea is that in order to impose risks responsibly we ought not act in ways that undermine our ability to remain in control over the risks, undermine our ability to sort out negative outcomes by reparations or compensation, or undermine our prospects of providing an explanation for our actions that also makes sense in hindsight and to those affected. This idea is then tried out on the case of germline gene editing. It is argued that such a moral notion of responsibility is also action-guiding when we do not know for certain what is the morally right or obligatory action all-things-considered due to epistemic gaps. (shrink)

Although classical evolutionary theory, i.e., population genetics and the Modern Synthesis, was already implicitly ‘gene-centred’, the organism was, in practice, still generally regarded as the individual unit of which a population is composed. The gene-centred approach to evolution only reached a logical conclusion with the advent of the gene-selectionist or gene’s eye view in the 1960s and 1970s. Whereas classical evolutionary theory can only work with (genotypically represented) fitness differences between individual organisms, gene-selectionism is capable of working with fitness differences (...) among genes within the same organism and genome. Here, we explore the explanatory potential of ‘intra-organismic’ and ‘intra-genomic’ gene-selectionism, i.e., of a behavioural-ecological ‘gene’s eye view’ on genetic, genomic and organismal evolution. First, we give a general outline of the framework and how it complements the—to some extent—still ‘organism-centred’ approach of classical evolutionary theory. Secondly, we give a more in-depth assessment of its explanatory potential for biological evolution, i.e., for Darwin’s ‘common descent with modification’ or, more specifically, for ‘historical continuity or homology with modular evolutionary change’ as it has been studied by evolutionary developmental biology (evo-devo) during the last few decades. In contrast with classical evolutionary theory, evo-devo focuses on ‘within-organism’ developmental processes. Given the capacity of gene-selectionism to adopt an intra-organismal gene’s eye view, we outline the relevance of the latter model for evo-devo. Overall, we aim for the conceptual integration between the gene’s eye view on the one hand, and more organism-centred evolutionary models (both classical evolutionary theory and evo-devo) on the other. (shrink)

In Tyranny of the Gene: Personalized Medicine and Its Threat to Public Health (Knopf, 2023), James Tabery traces the ascendance of personalized or precision medicine in America, arguing that America's emphasis on genetics offers more hype than transformational power. In his examination of the power struggles, social relationships, and technological advances that centered the gene in American health policy, Tabery demonstrates how an intensive focus on genetics draws attention away from both the fundamental causes of health disparities and more‐effective changes (...) that could be made to developmental, physical, and social environments. American policy‐makers, health care institutions, funders, and bioethicists should not let the technological shine and attractive politics of personalized medicine continue to replace the hard but necessary work of addressing sociopolitical causes of disease and illness. (shrink)

The utilisation of quantum theories within social science and biology is often reasonably met with dubiety. It would be even more controversial should such theories be applied to concepts under the domain of eugenics. Nonetheless, this can open up a fresh and unique understanding of theories that are usually understood by their classical structure. We will provide quantum interpretations of dysgenics and dysgenic traits from different scopes and procedures. The way dysgenic traits are in a flux with the environment that (...) they interact will be analysed as well as how they interact with each other under quantum conditions. We will also take into account of factors such as intelligence, genetic heritability, and other biological and cognitive factors and try to study their frameworks in non-classical ways. Using what we have theorised, we will also attempt to create numerical and empirical analyses of some of the theories that we have proposed. (shrink)

Germline gene editing has many applications or uses. This article focuses on specific applications. Specifically, the article draws on a moral norm arising from the thinking about the value of communal relationships in the Afro-communitarian _ubuntu_ philosophy to interrogate key issues that specific applications of germline gene editing – for xeno-transplantation, agriculture and wildlife – raise. The article contends that the application of germline gene editing in these areas is justified to the extent that they foster the capacity to relate (...) with others and to be communed with by others. The article grants that our today’s decisions about germline gene editing will likely affect future humans, but will attempt to justify how this may be ethically permissible. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:138 In 2010 the city of Colorado Springs was strapped for cash. Government officials announced that they would either have to raise revenue through increased taxation or cut public services—­ in some cases rather severely—­ including, perhaps, police and fire protection, and even more basic bits of municipal infrastructure. The city shut down one-­ third of residential streetlights and closed public restrooms. Citi­ zens were outraged, but a majority (...) of voters had recently defeated a proposed tax increase. It’s tempting to suppose that the city was trying to teach its citizens a lesson: if you want public services, you have to be willing to pay for them. Colorado Springs is, and has been for some time now, a died-­in-­the-­wool small-­government, anti-­tax-­increase, fiscally conservative town. As Colorado Springs resident Bo Sharifi put it, “As soon as I hear government [say] ‘Oh, we need more money’... I guess I kind of automatically assume there’s probably some other things you could probably cut before firemen, policemen, city lights and that sort of thing.”1 On the surface, that seems reasonable. So... what comes to mind? How about food stamps? What about WIC? Of course these are federal services, not funded by Coloradans alone. There’s government, and then there’s government. Well, how about... well... what? Doesn’t the government spend money on all sorts of things we could very easily do without? Perhaps. Isn’t it part of our job to know or to decide which things these are? If we don’t trust government, even more obviously we don’t trust it with our money, though we pretty clearly have no idea how public funds are actually allocated or spent. When asked whether he remembered the proposed tax increase that the city had voted against, Sharifi replied, “maybe.” Bo and his wife were charged $125 to have Connected: How Trains, Genes, Pineapples, Piano Keys, and a Few Disasters Transformed Americans at the Dawn of the Twentieth Century By Steven Cassedy Stanford: Stanford University Press, 2014 JOHN MARIANA Book Reviews 139 their streetlight turned back on. Bo’s wife Sara viewed this as extortion. “By shoveling out a hundred dollars to turn on a streetlight that we kind of felt was supposed to be on anyway, that it was giving them what they wanted,” she said. They who? One resident wrote the city of Colorado Springs a check for $300 to turn the lights on for his entire neighborhood. City Councilwoman Jan Martin pointed out to him that the total cost to the individual Colorado Springs taxpayer to keep the streetlights on—­and to fund the maintenance of public parks and medians, as well as community centers and pre-­recession-­level police and fire services—­by approving the tax increase would have been: $200. He replied that he would never vote for a tax increase. In other words, as the reporter who covered the story (Robert Smith) observed, he would rather pay more to keep the streetlights on in his own neighborhood than to pay for all city services combined. Smith remarked that “Colorado Springs was stepping away from one of the things that we take for granted in most American cities: that we’re all in it together—­ at least when it comes to basic services.”2 As near as I can tell, this is the moral of Steven Cassedy’s exceptionally timely Connected: that we’re all in it together. For much of the book Cassedy merely traces the history of the emergence in the consciousness of ordinary Americans of the concept of the social network, but he is not so much talking about the notion of a network society as such, as I understand him. Or, at any rate, the network society as such is not really his main concern. He is talking about the idea of social, political, national, and ultimately global and universal human interconnectedness that was a distinct product of the complex networked structures (both concrete and abstract) that came to constitute modern American life in the twentieth century (and of course life pretty much everywhere ), and about our understanding of ourselves as so networked.3 On this... (shrink)

Heyes presents a compelling account of how cultural evolutionary processes shape and create “rules,” or norms, of social behavior. She suggested that normativity depends on implicit, genetically inherited, domain-general processes and explicit, culturally inherited, domain-specific processes. Her approach challenges the nativist point of view and provides supporting evidence that shows how social interactions are responsible for creating mental processes that assist in understanding and behaving according to rules or norms. We agree. In our commentary, we suggest that it is not (...) only that mental processes for grasping norms are recreated in each generation but also that social interactions shape the kinds of social groups that are recognized (for a more extensive discussion, see Kish Bar-On & Lamm, 2023). We highlight evidence showing that accounts of norm psychology thus require a richer notion of human groups. (shrink)

CRISPR-Cas9 genome editing can and has altered human genomes, bringing bioethical debates about this capability to the forefront of philosophical and policy considerations. Here, I consider the underexplored implications of CRISPR-Cas9 gene drives for heritable human genome editing. Modification gene drives applied to heritable human genome editing would introduce a novel form of involuntary eugenic practice that I term guerrilla eugenics. Once introduced into a genome, stealth genetic editing by a gene drive genetic element would occur each subsequent generation irrespective (...) of whether reproductive partners consent to it and irrespective of whether the genetic change confers any benefit. By overriding the ability to ‘opt in’ to genome editing, gene drives compromise the autonomy of carrier individuals and their reproductive partners to choose to use or avoid genome editing and impose additional burdens on those who hope to ‘opt out’ of further genome editing. High incidence of an initially rare gene drive in small human communities could occur within 200 years, with evolutionary fixation globally in a timeframe that is thousands of times sooner than achievable by non-drive germline editing. Following any introduction of heritable gene drives into human genomes, practices intended for surveillance or reversal also create fundamental ethical problems. Current policy guidelines do not comment explicitly on gene drives in humans. These considerations motivate an explicit moratorium as being warranted on gene drive development in heritable human genome editing. (shrink)

In The Selfish Gene, Richard Dawkins’ argues that evolution, being a process of ruthless competition, results in selfish behavior. Human nature is short-sighted and amoral due to our genes. But he also insists humans have a unique capacity for moral behavior: Using reason we can suppress the natural instincts and act against our nature. In this chapter I show that Dawkins view is as old as the theory of evolution itself. It was first advocated by T.H. Huxley and criticized by (...) Peter Kropotkin. Kropotkin’s theory of mutual aid builds upon Darwin and seeks to establish a naturalistic grounding of human morality in the social instincts necessary for all social animals. This avoids the dualism implied in Dawkins’ and Huxley’s theories. It also raises questions of biological essentialism and determinism which the chapter discusses. Finally, the chapter compares the thoughts of Dawkins and Kropotkin with those of Friedrich Nietzsche. Nietzsche would have rejected Dawkins’ version of atheism that retains Christian views of the wickedness of bodily instincts. He was also critical of egalitarian movements which he thought were based in ressentiment. I show that Kropotkin’s views were in some ways quite close to Nietzsche’s as both advocate an affirmation of life. (shrink)

In light of scientific advances such as genomics, predictive diagnostics, genetically engineered agriculture, nuclear transfer cloning, and the manipulation of stem cells, the idea that genes carry predetermined molecular programs or blueprints is pervasive. Yet new scientific discoveries—such as rna transcripts of single genes that can lead to the production of different compounds from the same pieces of dna—challenge the concept of the gene alone as the dominant factor in biological development. Increasingly aware of the tension between certain empirical results (...) and interpretations of those results based on the orthodox view of genetic determinism, a growing number of scientists urge a rethinking of what a gene is and how it works. In this collection, a group of internationally renowned scientists present some prominent alternative approaches to understanding the role of dna in the construction and function of biological organisms. Contributors discuss alternatives to the programmatic view of dna, including the developmental systems approach, methodical culturalism, the molecular process concept of the gene, the hermeneutic theory of description, and process structuralist biology. None of the approaches cast doubt on the notion that dna is tremendously important to biological life on earth; rather, contributors examine different ideas of how dna should be represented, evaluated, and explained. Just as ideas about genetic codes have reached far beyond the realm of science, the reconceptualizations of genetic theory in this volume have broad implications for ethics, philosophy, and the social sciences. Contributors. Thomas Bürglin, Brian C. Goodwin, James Griesemer, Paul Griffiths, Jesper Hoffmeyer, Evelyn Fox Keller, Gerd B. Müller, Eva M. Neumann-Held, Stuart A. Newman, Susan Oyama, Christoph Rehmann-Sutter, Sahotra Sarkar, Jackie Leach Scully, Gerry Webster, Ulrich Wolf. (shrink)

Ethical debates around genetic enhancement tend to include an argument that the technology will eventually be fairly accessible once available. That we can fairly distribute genetic enhancement has become a moral defence of genetic enhancement. Two distribution solutions are argued for, the first being equal distribution. Equality of access is generally believed to be the fairest and most just method of distribution. Second, equitable distribution: providing genetic enhancements to reduce social inequalities. In this paper, I make two claims. I first (...) argue that the very assumption that genetic enhancements can be distributed fairly is problematic when considering our understanding of gene–environment interactions, for example, epigenetics. I then argue that arguments that genetic enhancements are permissible because the intended benefits can be distributed fairly as intended are misinformed. My first claim rests on the assertion that genetic enhancements do not enhance traits in a vacuum; genes are dependent on conducive environments for expression. If society cannot guarantee fair environments, then any benefit conferred from being genetically enhanced will be undermined. Thus, any argument that the distribution of genetic enhancements will be fair and that the technology is therefore morally permissible, is mistaken. (shrink)

Congenital deafness is one of the most common birth defects reported. Approximately 70% of congenital deafness is non-syndromic, and approximately 80% of non-syndromic hearing loss results from a genetic cause. Middleton et al.’s1998 study highlighted the negative attitudes of culturally Deaf individuals towards genetic testing for genes known to cause hearing loss. While studies concerning genetic testing for deafness genes reference Middleton’s study, to our knowledge a re-evaluation of the attitudes of Deaf individuals towards genetic testing has not been conducted (...) recently. The purpose of this study is to re-establish attitudes of Deaf individuals towards genetic testing of genes known to cause hearing loss. A computer-based questionnaire was distributed to members of the Deaf community. Responses of participants were recorded and analyzed. The primary investigator then attended Deaf community events and the 2015 Alabama Association of the Deaf Conference, and recruited individuals interested in participating in the study. The surveys were distributed to these individuals and their anonymous responses were analyzed. Our results show there are more positive attitudes within the Deaf community towards genetic counseling, genetic testing, and prenatal testing of genes known to cause hearing loss than were previously documented, although negative attitudes are still present. Additionally, our study shows there is a desire among members of the Deaf community to learn more about and potentially receive these services, despite the fact they are rarely offered by healthcare providers. (shrink)

In the 1970s, the number of accessions held in national and international seed and gene banks increased steadily. This growth, initially a source of pride, was recognised as a liability by the 1980s. Too many accessions lacked the basic information necessary for researchers to access and use samples knowledgably. Many gene banks came under scrutiny for poor management practices and several found themselves accused of mishandling a ‘global patrimony’ entrusted to their care. In this paper, I explore one response to (...) these concerns that attracted attention from many in the germplasm conservation community: creating linked, standardised databases of collections. Calls for more and better data about accessions often emphasised that these data would make collections easier to use and therefore more valued. Here I take a close look at the early history of data collation and standardisation as a means of ‘rationalising’ collections, a motivation that was not advertised as prominently. This historical example shows the infrastructures developed to facilitate data exchange in the context of seed and gene banking to have been tied up with both mundane imperatives to cut costs and lofty goals of building political bridges—in addition to the often-repeated ambition of making plant breeding more efficient. (shrink)