(2021). A Striking Look into the InvisibleWorld of Phase 1 Clinical Trials: A Book Review of Jill Fisher's Adverse Events. New Genetics and Society. Ahead of Print.

This article is about the governance of expectations of forensic DNA phenotyping (FDP) innovations in Germany used for the prediction of human externally visible traits such as eye, hair, and skin color, as well as biological age and biogeographic ancestry. In 2019, FDP technologies were regulated under the label “extended DNA analysis”. We focus on the expectations of members of the forensic genetics’

Although Next Generation Sequencing (NGS) has increased our ability to test and diagnose, its results are often not clear-cut and require a complex interpretation and negotiation process by both healthcare professionals and patients involved. In this paper, we explore how diagnoses identified through NGS are socially shaped under influence of the broader social context. Using an analytical framework

As precision oncology has evolved, patients and their families have become more involved in efforts to access these treatments via fundraising and campaigning that take place outside of the larger cancer charities. In this paper, we explore the solidarities, networks, and emotional work of the UK-based access advocates, drawing on the stories of nine advocates, which included interviews and content

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

Cambrosio et al. (2018. “Extending Experimentation: Oncology’s Fading Boundary Between Research and Care.” New Genetics and Society 37 (3): 207–226) argue that “experimental care” in contemporary oncology involves the rapid merging of patient research and care, and invite further study into developments across other health conditions. We present a 2018–2019 study of experimental breast cancer care

(2020). Virulent zones: animal disease and global health at China’s Pandemic epicenter. New Genetics and Society. Ahead of Print.

The rise of precision medicine represents a challenge for pathology, which must now more closely link research and diagnostic and collaborate on new bases with other specialties. Our paper is based on the study of four French cancer centers invested in developing precision medicine. Molecular biology is particularly threatening for pathologists in settings where medical oncologists and biologists believe

Key to precision medicine is the development of expert database projects that gather data, integrate them in the pre-existing database, and publish the product of their processing for others to make use of. Increasingly, it is required that data infrastructure managers and curators pursue and lead research projects on the data so as to learn about new ways data could be used or information that could

(2020). Call for New Genetics and Society Special Issues. New Genetics and Society: Vol. 39, No. 4, pp. 508-508.

(2020). Many thanks to New Genetics & Society reviewers. New Genetics and Society: Vol. 39, No. 4, pp. i-ii.

This paper details how the architectural features of a new cancer research center (henceforth “NCRC”) contribute to the alignment of different institutional settings, epistemic approaches and communities of practices around precision immuno-oncology. First, we show how the building’s designed emplacement produces an organizational change directed at accelerating the traffic of discoveries and the collaborations

Long-range familial searches in recreational DNA databases have been the subject of intense interest since the high-profile case of the Golden State Killer. This technique has raised considerable media attention and has sparked immediate criticism from forensic geneticists and other professionals, regulators, policy advisors, and ethicists. However, the literature on this topic does not capture the

This article partakes in a number of recent attempts to map the reconfiguration of clinical work as part of the deployment of precision oncology. We focus on the platforms, in particular Molecular Tumor Boards, that act as a condition of possibility for implementing innovative experimental interventions, and which are part of the emergence, beyond the traditional confines of diagnosis, of a data “ecosystem”

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

Genetic genealogy databases have become particularly attractive to law enforcement agencies, especially in the United States (US), which have started to employ genealogists to search them with unknown origin DNA from unidentified human remains (suicides, missing persons) or from a serious crime scene, to help identify the victim, or a potential suspected perpetrator, respectively. While this investigative

DNA profiling is just one of many tools available to police in a criminal investigation. However, unlike any other criminal investigative tool, DNA profiling has captured the public imagination. Its portrayal in popular fiction has given rise to the “CSI effect”, whereby the weight and credibility of science, combined with the predictive potential of DNA, produce an aura of infallibility and certainty

This paper describes and explores how translational research models, embedded in institutions and standards, interact with the epistemic and material practices of cell biologists of ageing, a field re-energized by emergent technoscientific promises that hinge on the possibility of eliminating or manipulating senescent cells to tackle age-related diseases. Drawing on a 3-year long lab ethnography, the

This article explores how a branch of genomic science that embraces and advocates anti-racism, public participation, consultation and inclusion unintentionally supports everyday discourses of race and racism. It focuses on the reproduction of racism and exposes the limits of anti-racist discourses that are embedded in public engagements with the science and technology of genetic ancestry testing. I

(2020). Frozen: social and bioethical aspects of cryopreservation. New Genetics and Society: Vol. 39, Frozen: Social and Bioethical Aspects of Cryopreservation, pp. 243-249.

(2020). Afterword: freezing technologies and melting distinctions. New Genetics and Society: Vol. 39, Frozen: Social and Bioethical Aspects of Cryopreservation, pp. 352-358.

This paper examines women’s experiences with decision-making about non-invasive prenatal testing (NIPT). Such tests offer knowledge about chromosomal disorders early in pregnancy, without the risk of miscarriage associated with invasive procedures such as amniocentesis. Based on qualitative interviews with women in Germany who used, or declined, NIPT, we show how some women, who would not consider

The growth of consumer DNA ancestry testing has resulted in questions and critiques being raised in social and research contexts. This study examined individuals discussing their ancestry DNA testing results on YouTube by searching for the two most popular testing companies (23andMe; Ancestry) and the phrase “DNA results.” The finalized dataset consisted of 117 videos, on which directed content analysis

In Aotearoa New Zealand, the government’s ambitious target of becoming “predator-free” by 2050 has reignited public discussion on biotechnologies. The disproportionate abundance of German and common wasps in New Zealand disrupts native biodiversity and costs $133 million annually to the economy, making exotic wasps an expedient trial pest species for novel biotechnological controls. Māori businesses

(2020). Non-humans in the making of nations. New Genetics and Society. Ahead of Print.

This article explores the ethical challenges following the use of genetic information in experimental cancer treatment. In Danish healthcare, current ethical debates on the wider use of genetic information are highly focused on the heredity of genetic information. This focus accords with the international bioethical literature and the established practices of assessing inherited risks for cancer. Drawing

(2020). Paternity: the elusive quest for the father. New Genetics and Society. Ahead of Print.

(2020). A genetic unraveling: book review of Making Sense of Genes by Kostas Kampourakis. New Genetics and Society. Ahead of Print.

Therapies and prophylactics using biologically derived materials such as cells, microbes or tissues are often portrayed as key to increased future health. This article investigates the material preconditions of such visions. Building on feminist new materialist approaches, it explores the embodied material encounters between biologicals administered into living bodies and the vibrant materiality of

This article examines how cryopreserved ovarian tissue is potentiated as a menopausal prevention and/or treatment cure. Based on a multi-sited ethnographic study, the article empirically foregrounds scientific accounts and interviews with Danish female cancer patients who had ovarian tissue preserved. Using situational analysis as a methodological approach along with analytical perspectives on potentiality

(2020). A portrait of assisted reproduction in Mexico: scientific, political, and cultural interactions. New Genetics and Society. Ahead of Print.

23andMe not only sells genetic testing but also uses customer data in its R&D activities and commercial partnerships. This raises questions about transparency and informed consent. Based on a online survey conducted in 2017–18, we examine attitudes of 368 customers of 23andMe toward the company's use of their data. Our findings point at divides in the context of customers' awareness of the two-sided

Forensic DNA Phenotyping (FDP) encompasses an emerging set of technologies aimed at predicting physical characteristics of unknown suspects from crime scene DNA traces. In its application FDP involves a variety of settings: research laboratories where FDP tests are developed, forensic laboratories where FDP technologies are used to analyze crime scene DNA traces, and finally the criminal investigation

While the demand for “social freezing” services has increased significantly in recent years, the number of cryopreserved eggs that are actually being used in treatment remains very low, so far. Both tendencies indicate a continuously growing stock of unused oocytes. In this article, I discuss the possibility that the growing stock could be co-opted to solve the problem of egg procurement especially

This study explored the relationship between visions of personalized medicine, for-profit companies, and state governance in the context of an ongoing discussion of “me” vs. “we” medicine. It took its empirical departure in a Scandinavian welfare state, Denmark, and a discourse analysis was conducted based on interviews, documents, webpages, and media sources from vital public and private stakeholders

(2020). Bioinsecurities: disease interventions, empire, and the government of species. New Genetics and Society. Ahead of Print.

In this paper I examine how the promissory value of genetics is constituted through processes of scale and scaling, focussing on the relationship between “rare” and “common” forms of disease. I highlight the bodies and spaces involved in the production of post-genomic knowledge and technologies of Alzheimer's disease and the development of new disease-modifying drugs. I focus on the example of the

This paper provides a comparison of how genetic biomarkers are used (or not) in three contexts: clinic-based diagnostic work with people; lab-based research on mice and their marbles; and lab-based research on thrashing nematodes. For all the worldwide drive to find biomarkers that can be used in the detection of early, presymptomatic dementia, there is little research on how or when the association

Predictive medicine presents opportunities to consider later life under conditions of illness, such as dementia. This paper examines how family caregivers (N = 27) assess the opportunity of prediction and early diagnosis of dementia for oneself based on their particular experience. Furthermore, it compares their attitudes with laypersons’ attitudes (N = 43) towards genetic testing of APOE. By this

Recently, a major turning point in the field of dementia research has occurred: serious and independent studies have shown that there are risk factors that can be modified in ways that reduce dementia risk. However, the reality behind this hopeful message is much more complex than simply translating it into concrete public health prescriptions regarding medications and lifestyle changes. The objective

The Alzheimer's disease (AD) research landscape is dominated by efforts to predict and prevent the condition. In clinical practice, it is difficult to establish normal aging from pathological cognitive deterioration and “imaginaries of deterioration” tied to “loss of self” take on a material form and impact assessment and diagnostic practice. Drawing on qualitative data gathered across a memory service

(2020). Alzheimer’s disease and the development of a post-genomic science. New Genetics and Society: Vol. 39, Alzheimer’s disease as post-genomic science, pp. 1-12.

Leading research projects are evidence of the growing public interest in genetic diagnosis and treatment. In this context, disclosure of genetic information to relatives has become a prominent issue. However, this involves patient confidentiality, which is grounded in law and conflicts with disclosure to relatives. When conducting a legal and bioethical discussion in this context, it is first necessary

(2020). Television and the genetic imaginary. New Genetics and Society. Ahead of Print.

Genome editing enables very accurate alterations to DNA. It promises profound and potentially disruptive changes in healthcare, agriculture, industry, and the environment. This paper presents a multidisciplinary analysis of the contemporary development of genome editing and the tension between continuity and change. It draws on the idea that actors involved in innovation are guided by “sociotechnical

Synthetic biologists attempt to apply engineering principles to biological systems. This involves treating organisms as “chassis” – neutral frames into which synthetic constructs can be inserted, rather than living entities with distinctive features. Here we focus on a particularly charismatic organism – Saccharomyces cerevisiae (brewer's yeast) – and the attempt to make a synthetic version of its

Although IVF and egg freezing have received much scholarly attention, the pivotal role of financialization in the fertility (preservation) sector remains understudied. This article discusses how processes of financialization have instigated a step-change in the organization of contemporary US IVF and why egg freezing is at the heart of a wider consolidating trend in the sector. The financialization

Social scientists have observed previously that patient support groups began to have significant influence over both research and clinical services of medical genetics in the early 2000s. This observation led to the idea of genetic citizenship, suggesting that the active participation and intervention of patient support groups in the rapidly growing field of medicine marked the emergence of a new form

In an Israeli qualitative study with adolescent cancer survivors and parents who had considered fertility preservation, practically all participants could not recall any discussions with healthcare providers about plans for cryopreserved biological materials in the case of death. This finding is surprising given recent court struggles in Israel over the posthumous use of cryopreserved sperm. In interviews

To explore the clinical uptake of pharmacogenetic/pharmacogenomic toxicity testing to reduce adverse drug reaction incidences, this paper analyzes data collected through semi-structured face-to-face interviews with clinicians and/or clinician-scientists, primarily in the context of cancer treatment in multi-ethnic California (US), Vancouver (Canada) and Singapore. Recurrent themes in the data include

(2020). Psychiatric genetics: from hereditary madness to big biology. New Genetics and Society: Vol. 39, No. 4, pp. 502-504.

(2020). Mobilizing mutations: human genetics in the age of patient advocacy. New Genetics and Society: Vol. 39, No. 4, pp. 504-507.

This paper is a critical reflection on the concepts of Responsible Innovation (RI) and Responsible Research and Innovation (RRI). We offer an account of the emergence of these related but different accounts of responsible innovation that have recently been adopted by funders. We further report on our exploration of the knowledge and understanding of these concepts through the views of senior scientists

Parents in various countries have contemplated having grandchildren from their deceased sons’ sperm; however, posthumous grandparenthood (PHG) has been permitted as a matter of policy only in Israel, leading to a significant body of litigation. Using document analysis of all published court cases involving PHG in Israel, this article is the first to explore this turbulent sociolegal debate, framing

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

Public Umbilical Cord Blood (UCB) banking is defined by the dominant bioethics and biomedical literature as working in a regime of valuation that connects the social value of solidarity and the clinical value of collected quality UCB. Adopting the notion of registers of valuing (Heuts, F., and A. Mol. 2013. “What Is a Good Tomato? A Case of Valuing in Practice.” Valuation Studies 1 (2): 125–146), this

(2019). Many thanks to New Genetics & Society reviewers. New Genetics and Society: Vol. 38, No. 4, pp. 468-469.

Direct-to-consumer genetic testing products and their participatory social media outlets provide users with new ways to understand ancestral identity, build community around shared results, and conceptualize the role of genetic determinism in their lives. In this article, I explore of role of user-generated information constructed with results from direct-to-consumer genetic scanning services such

The genome of Saccharomyces cerevisiae – brewer’s or baker’s yeast – was the first eukaryotic genome to be sequenced in 1996. The identity of that yeast genome has been not just a product of sequencing, but also of its use after sequencing and particularly of its mobilization in scientific literature. We ask “what is the yeast genome?” as an empirical question by investigating “the yeast genome” as

Direct-to-consumer (DTC) genetic tests (GT) enable consumers to access a wide range of GT, without involving a healthcare professional, promoting an increasing disassociation of genetics from the clinical context. This study explores, through semi-structured interviews, the experiences and attitudes of European clinical geneticists towards DTCGT. Our results indicate that the participants have limited