Anna Harris

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.

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.

Developing Sensory Awareness in Qualitative Interviewing A Portal Into the Otherwise Unexplored

Within the social sciences there has been an increased interest in the senses. Much of this work has focused on ethnographic methods and has concentrated on research about the senses. In this article we focus on interviews and examine the value of expanded interviewing strategies that use the senses as access points. We argue that a sensory awareness can enrich interviews by offering a portal to otherwise unexplored illness or health care experiences which are either too difficult to articulate or too intangible to describe. Sensory awareness incorporates not only attentiveness to the research environment but also the utilization of sensory questions or prompts to gain insight into the research experience. We draw from a variety of empirical studies, and offer methodological guidance to the researcher while exploring ethical and challenging aspects of incorporating sensory awareness into the research interview.

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.

Sharing sound: teaching, learning, and researching sonic skills

Abstract Articulating how to enact a sensory skill is a challenging prospect, as illustrated through the teaching and learning of novices. This article examines strategies employed to overcome the challenges of sharing sensory experience by exploring how medical professionals learn and teach skills of listening to sound: that is, of teaching medical students, and of medical students learning, sonic skills. The article draws on ethnographic research conducted in medical schools and hospitals in Australia and the Netherlands and on historical research conducted in medical archives and libraries in France, the United Kingdom and the United States, from the 1950s until the present. The first part of the paper focuses on the key, often creative, solutions our participants constructed for sharing their knowledge of body sounds, and techniques for its analysis. These didactic solutions are organized in three sections: demonstration; mimicry and repetition; and rhythm and improvisation. We argue that no one strategy leads to the enskillment of novices in listening, but rather, that through the coordination of practices of learning and teaching there is an attempt to obtain ‘sonic alignment’. The second part of the article extends our study of sharing sounds by examining how researchers learn about sonic skills from research participants. Looking at the proposed methodological solutions to the conundrum of how to share audible experience, we reflect on our own ethnographic and historical techniques to attempt sonic alignment with those we study. By integrating into our analysis how we, as researchers, enacted our research material, we understand more about how life we study is enacted too.

Treatment of hemophilia: A qualitative study of mothers’ perspectives

In Norway, boys with hemophilia usually begin treatment after their first bleeding episode. Boys with severe hemophilia usually start prophylactic treatment around 18–24 months. Health professionals administer factor concentrate initially, but when boys are around 4 years old most parents start treating their children at home. There is a lack of research on how parents, and especially how carrier mothers, experience the medical treatment for their sons’ hemophilia. Our aim was to investigate how carrier mothers experience this treatment in the hospital setting and at home.

Listening-touch, Affect and the Crafting of Medical Bodies through Percussion:

The growing abundance of medical technologies has led to laments over doctors’ sensory de-skilling, technologies viewed as replacing diagnosis based on sensory acumen. The technique of percussion has become emblematic of the kinds of skills considered lost. While disappearing from wards, percussion is still taught in medical schools. By ethnographically following how percussion is taught to and learned by students, this article considers the kinds of bodies configured through this multisensory practice. I suggest that three kinds of bodies arise: skilled bodies; affected bodies; and resonating bodies. As these bodies are crafted, I argue that boundaries between bodies of novices and bodies they learn from blur. Attending to an overlooked dimension of bodily configurations in medicine, self-perception, I show that learning percussion functions not only to perpetuate diagnostic craft skills but also as a way of knowing of, and through, the resource always at hand; one’s own living breathing body.

Introduction to Participatory Knowledge Production 2.0?: Critical Views and Experiences

In recent years, the role of social media (also referred to as Web 2.0, user-generated content, participation, and crowd sourcing) in nearly all aspects of daily life has hardly been out of the new...

International medical graduates in transition

Background:  Medical migration is now more frequent, and raises complex issues concerning the standards of practice and transitions required for doctors. The challenges faced by international medical graduates have been acknowledged through the proliferation of orientation programmes designed within hospitals. This paper discusses and evaluates a pilot orientation programme for doctors in Victoria, Australia, called Transition in Practice.