Sally Wyatt

Counseling customers: Emerging roles for genetic counselors in the direct-to-consumer genetic testing market

Individuals now have access to an increasing number of internet resources offering personal genomics services. As the direct-to-consumer genetic testing (DTC GT) industry expands, critics have called for pre- and post-test genetic counseling to be included with the product. Several genetic testing companies offer genetic counseling. There has been no examination to date of this service provision, whether it meets critics’ concerns and implications it may have for the genetic counseling profession. Considering the increasing relevance of genetics in healthcare, the complexity of genetic information provided by DTC GT, the mediating role of the internet in counseling, and potential conflicts of interest, this is a topic which deserves further attention. In this paper we offer a discourse analysis of ways in which genetic counseling is represented on DTC GT websites, blogs and other online material. This analysis identified four types of genetic counseling represented on the websites: the integrated counseling product; discretionary counseling; independent counseling; and product advice. Genetic counselors are represented as having the following roles: genetics educator; mediator; lifestyle advisor; risk interpreter; and entrepreneur. We conclude that genetic counseling as represented on DTC GT websites demonstrates shifting professional roles and forms of expertise in genetic counseling. Genetic counselors are also playing an important part in how the genetic testing market is taking shape. Our analysis offers important and timely insights into recent developments in the genetic counseling profession, which have relevance for practitioners, researchers and policy makers concerned with the evolving field of personal genomics.

Reinventing Research? Information Practices in the Humanities.

Researchers in the humanities adopt a wide variety of approaches to their research. Their work tends to focus on texts and images, but they use and also create a wide range of information resources, in print, manuscript and digital forms. Like other researchers, they face multiple demands on their time, and so they find the ease and speed of access to digital resources very attractive: some of them note that they are reluctant on occasion to consult texts that require a trip to a distant library or archive. Nevertheless, none of the participants in our study is yet ready to abandon print and manuscript resources in favour of digital ones. Rather, they engage with a range of resources and technologies, moving seamlessly between them. Such behaviours are likely to persist for some time.This is reflected also in how researchers disseminate their research. The overwhelmingly dominant channels are the long-established ones such as journal articles, conferences and workshops, monographs and book chapters. We found only limited use – except among philosophers - of blogs and other social media. We noted the doubts expressed in other fields about quality assurance for users of such media, but also concerns about how best to present material that will be read by non-academic audiences.A key change in humanities research over the past 10-15 years has been the growth of more formal and systematic collaboration between researchers. This is a response in part to new funding opportunities, but also to the possibilities opened up by new technology. Over recent years there has also been a shift from the model under which technology specialists tell researchers how to do their research to more constructive engagement. Like other researchers, scholars in the humanities use what works for them, finding technologies and resources that fit their research, and resisting any pressure to use something just because it is new.But there is little evidence as yet of their taking full advantage of the possibilities of more advanced tools for text-mining, grid or cloud computing, or the semantic web; and only limited uptake of even simple, freely-available tools for data management and sharing. Rather, they manage and store information on their desktops and laptops, and share it with others via email. Barriers to the adoption and take up of new technologies and services include lack of awareness and of institutional training and support, but also lack of standardization and inconsistencies in quality and functionality across different resources. These make for delays in research, repetitive searching, and limitations on researchers’ ability to draw connections and relationships between different resources.

Turning to ontology in STS? Turning to STS through 'ontology'

We examine the evidence for the claim of an ‘ontological turn’ in science and technology studies (STS). Despite an increase in references to ‘ontology’ in STS since 1989, we show that there has not so much been an ontological turn as multiple discussions deploying the language of ontology, consisting of many small movements that have changed the landscape within STS and beyond. These movements do not point to a shared STS-wide understanding of ontology, although it can be seen that they do open up STS to neighbouring disciplines. Three main thematic complexes are identified in this literature: constructivism and realism; instruments and classification; and the social sciences and the humanities. The introduction of ontology into the long-running constructivism-realism debate can be considered as an acknowledgement on both sides that objects are real (i.e. pre-existing the situation) and constructed at the same time. The second thematic complex focuses on the role of instruments and classification in establishing not only relations of heterogeneity, but also of stability. The third thematic complex broadens the debate and actively seeks to promote an STS-driven ontological turn for research concerned with the humanities and the social sciences more generally. This study is based on both quantitative and qualitative interpretations of the literature.

What a difference a colon makes: how superficial factors influence subsequent citation

Getting cited is important for scholars and for the institutions in which they work. Whether because of the influence on scientific progress or because of the reputation of scholars and their institutions, understanding why some articles are cited more often than others can help scholars write more highly cited articles. This article builds upon earlier literature which identifies seemingly superficial factors that influence the citation rate of articles. Three Journal Citation Report subject categories are analyzed to identify these effects. From a set of 2,016 articles in Sociology, 6,957 articles in General & Internal Medicine, and 23,676 articles in Applied Physics, metadata from the Web of Knowledge was downloaded in addition to PDFs of the full articles. In this article number of words in title, number of pages, number of references, sentences in the abstract, sentences in the paper, number of authors and readability were identified as factors for analysis.

THE GIFT OF SPIT (AND THE OBLIGATION TO RETURN IT): How consumers of online genetic testing services participate in research

People can now send a sample of their saliva to an internet-based company in order to discover genetic information about themselves. Entering this ‘direct-to-consumer’ genetic testing (DTC GT) marketplace can result in enticement to engage in various forms of ‘participatory’ practices, such as taking part in genetic research. In this article, we analyse the research activities of one of the largest and best-known DTC GT companies, 23andMe. 23andMe research is based on what they term ‘participant-led’ research methodologies, which utilize a combination of consumers’ genetic information and self-reported data in the form of completed online surveys. Our analysis shows that 23andMe presents research participation as a form of gift exchange, implying some kind of social bond. Social ties between the consumer-participant and 23andMe are integral to the companys ‘novel’ research agenda which relies on the ongoing aggregation of data from a loyal re-contactable cohort. We argue that the notion of gift exchange is used to draw attention away from the free, clinical labour which drives the profitability of 23andMe. We offer an account of a particular form of online research participation which differs from other kinds of participatory medical research. As medical research becomes increasingly driven by large data sets and internet-based research methods, we offer a timely analysis of emerging participatory practices.

Illness Online: Self-reported Data and Questions of Trust in Medical and Social Research

Self-reported data are regarded by medical researchers as invalid and less reliable than data produced by experts in clinical settings, yet individuals can increasingly contribute personal information to medical research through a variety of online platforms. In this article we examine this ‘participatory turn’ in healthcare research, which claims to challenge conventional delineations of what is valid and reliable for medical practice, by using aggregated self-reported experiences from patients and ‘pre-patients’ via the internet. We focus on 23andMe, a genetic testing company that collects genetic material and self-reported information about disease from its customers. Integral to this research method are relations of trust embedded in the information exchange: trust in customers’ data; trust between researchers/company and research subjects; trust in genetics; trust in the machine. We examine the performative dimension of these trust relations, drawing on Shapin and Schaffer’s (1985) discussion of how material, literary and social technologies are used in research in order to establish trust. Our scepticism of the company’s motives for building trust with the self-reporting consumer forces us to consider our own motives. How does the use of customer data for research purposes by 23andMe differ from the research practices of social scientists, especially those who also study digital traces? By interrogating the use of self-reported data in the genetic testing context, we examine our ethical responsibilities in studying the digital selves of others using internet methods. How researchers trust data, how participants trust researchers, and how technologies are trusted are all important considerations in studying the social life of digital data.

Home on the Range What and Where is the Middle in Science and Technology Studies

This article introduces the special issue on middle-range theory in science and technology studies (STS), providing the background to its production and reviewing different notions of “middle.” It begins with Mertons ideas about middle-range theory as a way of moving beyond the production of either descriptions or theories of everything. Instead of seeing the middle as the space between the theoretical imagination and the detailed depiction of everyday practices, the authors outline three ways of thinking about the middle range: as an adjective, the closest to Mertons conception; as a noun, the liminal place between theories, audiences, and levels; and as a verb, a process, a means of making connections across time, discipline, community, and place. A summary of each of the articles in this special issue is provided, preceding a call for further discussion about the role of case studies and the nature of the middle in STS.

Co‐ordinating Passages: Understanding the Resources Needed for Everyday Mobility

Abstract This article contributes to the ‘mobilities turn’ in social science by proposing new concepts and methods for analysing the ways in which people draw upon a range of resources to manage everyday mobility. We distinguish between the ‘projects’ people want to achieve and the ‘passages’ they need to go through in order to do so. We also distinguish between ‘pre‐travelling’ and ‘re‐ordering’. The analysis builds on insights from time‐geography, mobility studies and actor‐network‐theory to develop a conceptual vocabulary for understanding the dynamic and situated nature of travel in everyday life. The study combines qualitative and quantitative data from a study of hypermobile people in the Netherlands.

FEMINISM, TECHNOLOGY AND THE INFORMATION SOCIETY Learning from the past, imagining the future

This article examines second wave and post-second wave feminist writing about the possibilities of (contemporaneously) new information and communication technologies. A number of texts by key authors, including Shulamith Firestone, Valerie Solanas, Cynthia Cockburn, Donna Haraway and Sadie Plant, are examined in light of the social and political context of their time of writing as well as in relation to ‘mainstream’ information society theorists such as Daniel Bell and Manuel Castells. The main focus is on how these authors understand the transformative potential of technologies, and attention is drawn to the swings between optimism and pessimism about the role of technology for a feminist political agenda. The role and nature of manifestos are also explored, and the question of whether it is time for another feminist technology manifesto is raised. The article concludes by posing some methodological and theoretical challenges of developing an anti-essentialist (in relation to both gender and technology), politically engaged and relevant feminist research agenda that takes seriously both lived experience and structures of power. The footnotes are an experiment in autobiographical writing in which I make explicit my own connection to this literature and the politics of these debates.

Autobiologies on YouTube: narratives of direct-to-consumer genetic testing

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 may become “patients-in-waiting.” In the videos analyzed, we found a new form of storytelling about this ambiguous state of illness, which we refer to as autobiology. Autobiology – the study of, and story about, ones own biology – concerns narratives of sense-making through forms of biological practice, as well as wayfaring narratives which interweave genetic markers and family histories of disease. These autobiologies – part of a broader shift toward public stories about genetics and other healthcare technologies – exhibit playfulness, as well as being bound with consumerist practices.