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. Ahead of Print.

(2020). Mobilizing mutations: human genetics in the age of patient advocacy. New Genetics and Society. Ahead of Print.

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

In recent years, discourses around "personalized," "stratified," and "precision" medicine have proliferated. These concepts broadly refer to the translational potential carried by new data-intensive biomedical research modes. Each describes expectations about the future of medicine and healthcare that data-intensive innovation promises to bring forth. The definitions and uses of the concepts are, however

This paper explores clinicians' and scientists' accounts of genomic research in cancer care and the complexities and challenges involved with delivering this work. Contributing to the sociology of (low) expectations, we draw on sociological studies of uncertainty in medicine to explore their accounts of working with uncertainty as part of the management of patient and institutional expectations. We

The first French clinical trial using human embryonic stem cells for regenerative purposes was launched in 2014, using the I6 stem cell line that was imported from Israel. From Israel to France, national reproductive policies and practices inform how basic scientists produce, manage and circulate cells across countries. Building on an interdisciplinary co-production involving two social scientists

Sociological literature has explored how shifts in the point at which individuals may be designated as diseased impact upon experiences of ill health. Research has shown that experiences of being genetically "at risk" are shaped by and shape familial relations, coping strategies, and new forms of biosociality. Less is known about how living with genetic risk is negotiated in the everyday and over time

Since the completion of the Human Genome Project, there have been pitched debates about its implications and the research it enables. One prominent thread of concern focuses on the role of post-genomic science on technically enabling and generating interest in genetic ancestry testing (GAT). Critical analyses of GAT have pointed to multiple issues, raising the alarm on consumers' experiences with such

The UK's 100,000 Genomes Project has the aim of sequencing 100,000 genomes from UK National Health Service (NHS) patients while concomitantly transforming clinical care such that whole genome sequencing becomes routine clinical practice in the UK. Policymakers claim that the project will revolutionize NHS care. We wished to explore the 100,000 Genomes Project, and in particular, the extent to which

Bioinformatics, a specialism propelled into relevance by the Human Genome Project and the subsequent -omic turn in the life science, is an interdisciplinary field of research. Qualitative work on the disciplinary identities of bioinformaticians has revealed the tensions involved in work in this "borderland." As part of our ongoing work on the emergence of bioinformatics, between 2010 and 2011, we conducted

Richard Lewontin proposed that the ability of a scientific field to create a narrative for public understanding garners it social relevance. This article applies Lewontin's conceptual framework of the functions of science (manipulatory and explanatory) to compare and explain the current differences in perceived societal relevance of genetics/genomics and proteomics. We provide three examples to illustrate

Biobanks are increasingly being established to act as mediators between patient-donors and researchers. In practice, some of these will close. This paper details the experiences of one such bank. We report interviews with the bank's staff and oversight group during the period when the bank ceased biobanking activity, reconfigured as a disseminator of best practice, before then closing altogether. The

The epigenetic "revolution" in science cuts across many disciplines, and it is now one of the fastest growing research areas in biology. Increasingly, claims are made that epigenetics research represents a move away from the genetic determinism that has been prominent both in biological research and in understandings of the impact of biology on society. We discuss to what extent an epigenetic framework

In the space of little more than a decade, ideas of the human genome have shifted significantly, with the emergence of the notion that the genome an individual changes with development, age, disease, environmental inputs, and time. This paper examines the emergence of the genome with a life span, one that experiences drift, instability and mutability, and a host of other temporal changes. We argue

Carrying out research in genetics and genomics and communicating about them would not be possible without metaphors such as "information," "code," "letter" or "book." Genetic and genomic metaphors have remained relatively stable for a long time but are now beginning to shift in the context of synthetic biology and epigenetics. This article charts the emergence of metaphors in the context of epigenetics

Twenty-three years ago when women and their children were recruited to a longitudinal genetic epidemiological study during pregnancy, placentas were collected at birth. This paper explores the history of a regional placenta biobank and contemporary understandings of its value for the constitution of a research population. We draw on interviews with some of the mothers and those responsible for the

Advances in genetic medicine may have implications for how we should think about personal responsibility for health, because they may show how it is possible to exert some control over risk factors that were previously thought as beyond the individual's control. Although we cannot control the genes that we are born with, we can often make decisions concerning genetic testing, disease prevention, and

People hold diverse beliefs regarding the etiologies of individual and group differences in behaviors which, in turn, might affect their attitudes and behaviors. It is important to establish how perceived etiologies for smoking might affect the effectiveness of policy initiatives and prevention efforts. The present study assessed whether exposure to genetic vs. environmental accounts for smoking affects

Recent social science scholarship has employed the term "pharmaceuticalization" in analyses of the production, circulation and use of drugs. In this paper, we seek to open up further discussion of the scope, limits and potential of this as an analytical device through consideration of the role of law and legal processes in directing pharmaceutical flows. To do so, we synthesize a range of empirical

Stem cell treatments are being offered in Indian clinics although preclinical evidence of their efficacy and safety is lacking. This is attributed to a governance vacuum created by the lack of legally binding research guidelines. By contrast, this paper highlights jurisdictional ambiguities arising from trying to regulate stem cell therapy under the auspices of research guidelines when treatments are

Despite a growing personal genomics market, little is known about how people engage with the possibilities offered by direct-to-consumer (DTC) genetic testing. In order to help address this gap, this study deploys narrative analysis of YouTube videos posted by individuals who have purchased DTC genetic testing for disease. Genetic testing is said to be contributing to new states of illness, where individuals

Epigenetics is the study of changes in gene expression caused by mechanisms other than changes in the DNA itself. The field is rapidly growing and being widely promoted, attracting attention in diverse arenas. These include those of the social sciences, where some researchers have been encouraged by the resonance between imaginaries of development within epigenetics and social theory. Yet, sustained

In 2006, a small group of UK academic scientists made headlines when they proposed the creation of interspecies embryos - mixing human and animal genetic material. A public campaign was fought to mobilize support for the research. Drawing on interviews with the key scientists involved, this paper argues that engaging the public through communicating their ideas via the media can result in tensions

In terms of stem cell research, China appears both as a "powerhouse" armed with state-of-the-art facilities, internationally trained personnel and permissive regulation and as a "bit player," with its capability for conducting high quality research still in question. The gap between China's assiduous endeavors and the observed outcome is due to a number of factors. Based on interviews with 48 key stakeholders

Health-related direct-to-consumer (DTC) genetic testing has been a controversial practice. Especially problematic is predictive testing for Alzheimer disease (AD), since the disease is incurable, prevention is inconclusive, and testing does not definitively predict an individual's future disease status. In this paper, I examine two contrasting cases of subjects who learn through genetic testing that

Since 2007, consumer genomics companies have marketed personal genome scanning services to assess users' genetic predispositions to a variety of complex diseases and traits. This study investigates early users' reasons for utilizing personal genome services, their evaluation of the technology, how they interpret the results, and how they incorporate the results into health-related decision-making.

The moral status of the human embryo has gained much attention in debates over the acceptability, or otherwise, of human embryonic stem cell research. Far less attention has been paid to the suppliers of those embryos: people who have undergone IVF treatment to produce embryos to assist them to have a baby. It is sociologically and ethically important to understand their views and experiences of being

The biotechnological revolution presents states and governments with a set of challenges that they have difficulty meeting. Part of the problem is associated with common perceptions of the speed, volume and the radical uncertainty of the new developments. Globalisation is also implicated, especially in relation to the development of the knowledge economy and the role of multinational actors. This in

Disquiet relating to the potential for knowing one's 'fate' emerged strongly in sixteen focus groups relating to genetic testing held in Aotearoa/New Zealand. This paper draws on the concept of 'life itself', rephrased here as 'capitalised genomics', to understand this reaction. A tension relating to the discourse of geneticisation, in which 'the gene' is held to carry essential identity, links to

A recent addition to the debate about the benefits and harms of direct-to-consumer (DTC) advertising of medicines and pharmaceuticals is a growing critique of DTC marketing and sale of genetic tests. Academic and policy literatures exploring this issue have, however, tended to focus on the sale of genetic tests, paying rather less attention to the particular implications of advertising. The globalization

This article explores the process through which the advances of genetic research are incorporated into public health care in Denmark. Drawing on ethnographic fieldwork in cancer genetic counselling, the implementation of new medical advances is investigated by following the establishment of a policy on informing relatives at risk of hereditary cancer. This case material provides the occasion to examine

This paper examines diverging notions of value in the use of tissue sample collections and other information resources using a case study of hereditary colorectal cancer research in Finland. Recent science and technology policies that emphasize the production of commercial value derived from tissue sample collections are challenged by varying conceptions of value, as well as structural factors that

The success of mammal cloning in 1997 has brought the issue of human cloning into public discussion. Human cloning has several aspects and potential applications for use in both reproductive and non-reproductive matters. The aim of this study was to evaluate the knowledge and attitudes toward human cloning in Israel. Data from 120 respondents (68 health professionals and 52 non-health professionals)

In this article we discuss the development of a practice of screening, preventive treatment, and presymptomatic testing for individuals at risk of Familial Adenomatous Polyposis (FAP), a specific hereditary predisposition for colon cancer. We describe this development as a process of co-evolution, showing how this practice has been gradually taking shape in a new network of actors, routines, rules

After the birth of Dolly, media stories on cloning were replete with references to well-known science fiction plots. This essay criticizes the 'imagination deficit' of scientists and journalists, first by problematizing the uncritical adoption of attentuated science fiction plots in the media coverage of Dolly, and second, by proposing to look at more expansive science fiction novels that carefully

Increasingly scientists and governmental policymakers find themselves leaving their laboratories and office cubicles to share information and decision making with the general public. Contributing in large part to the development of science communication via the mass media has been the Human Genome Project (HGP). Examining the development of the HGP in the United States beginning with the early 1970s