'Science Communication Meets Consumer Relations: An Analysis of Twitter Use by 23andMe' by Nicole M. Lee, Alan Abitbol and Matthew S. VanDyke in (2020) 42(2) Science Communication comments
For-profit organizations play a considerable role in the dissemination of scientific research and information. In the case of direct-to-consumer genetic testing, this is important because how consumers learn about genetic science can influence health decisions and support for science. Through a content analysis of Twitter posts (N = 1,000), this study examined how 23andMe balances traditional promotion, communicating product benefits, and sharing scientific research. Results indicated that about half of all posts share science news but sharing science has declined over time. Far fewer posts communicate about the products or their benefits, but these posts garner more retweets and replies.
Science communication has grown as both a professional practice and area of scholarly study in recent decades (Akin & Scheufele, 2017). When it comes to the sharing of scientific discoveries and news, research has examined the communication of organizations such as universities (e.g., Trench, 2017) and government agencies (e.g., Lee & VanDyke, 2015). However, science is also an integral part of many for-profit companies; and depending on the type of products or services they provide, science communication may become part of their corporate communication efforts. This may include communicating technical information about the product itself, but may also extend beyond that to include sharing industry news and scientific discoveries more broadly.
Direct-to-consumer (DTC) genetic testing companies offer an interesting example of corporate activity, where explaining the science itself to consumers might be seen as important from a marketing or consumer relations perspective. This deserves more study because consumer knowledge of genetic science likely aids in interpretation of test results and may also influence how consumers perceive related scientific topics. In the case study presented here, we examine the Twitter activity of 23andMe, which is one of the largest DTC genetic testing companies, was the first to receive FDA approval, and until recently was also the only major genetic testing company to offer both health and ancestral information (Hayden, 2017).
Part of why understanding the communication habits of genetic testing companies is important is the immense popularity of the tests. In fact, as of July 2019, 15% of U.S. adults had taken at least one DTC genetic test (Graf, 2019). Despite the popularity, 23andMe and other companies face many challenges related to assuaging concerns about data security and privacy and communicating with consumers about the science behind their product and what it can tell them (AP-NORC, 2018). Like other consumer-facing companies, one way DTC genetic-testing companies connect with consumers is by communicating the benefits of their products (Singleton et al., 2012). For instance, they may communicate about the health information consumers can learn from individual tests (Covolo et al., 2012) or share heartwarming stories about relatives meeting for the first time. By communicating benefits, companies strive to match the personal values of the consumer as consumers make purchasing decisions based on the “benefits they get from buying, using or consuming the product” (Hooley & Saunders, 1993, p. 17).
One medium that companies, including 23andMe, use to connect with consumers and communicate product benefits is Twitter. Twitter can provide consumers an opportunity to directly engage with a company. Consumers can reply to tweets made by a company, share a company’s tweets with their followers, and can private message a company with concerns or questions. These engagement practices can help consumers feel a personal connection with the company, which can ultimately lead to increased support and generate revenue (Baird & Parasnis, 2011). Relevant to the current study, Twitter is also a preferred platform among the science community (Collins et al., 2016).
The authors conclude
Communicating about complex topics has always been a challenge for organizations. Consumers may get overwhelmed by the information communicated, and organizations struggle with articulating messages in a succinct and simple way. In the world of science, this especially has been a concern. Extant research has explored how science organizations communicate to their main constituents (e.g., Jarreau et al., 2019; Lee & VanDyke, 2015), but we have seen less focus on the science communication practices of for-profit companies, especially beyond communicating specifics of a product. Companies communicate about various topics related to health and the environment that can have substantial implications at the individual and society levels. The DTC genetic testing industry offers an opportunity for researchers to investigate the efforts of for-profit companies to communicate about science to a lay consumer audience. Our study strongly suggests that 23andMe communicates about genetic science beyond explaining its own products but that these efforts have declined over time. This study provides a basis for further research on DTC genetic-testing companies, their science communication, and the effects of that communication.
'Direct-to-Consumer Genetic Testing and Its Marketing: Emergent Ethical and Public Policy Implications' by Alexander Nill and Gene Laczniak in (2020) Journal of Business Ethics comments
This paper provides a marketing ethics analysis that addresses the practice of selling genetic tests (GT) directly to the consumer (DTC). It details the complexity of this emergent sector by articulating the panoply of evolving ethical/social questions raised by this development. It advances the conversation about DTC genetic testing by reviewing the business and healthcare literature concerning this topic and by laying out the inherent ethical complications for consumers, marketers, and regulators. It also points to several possible public and company policy adjustments. Because this area is relatively new and incredibly dynamic, its current discussion is necessarily an exercise in the “logic of discovery” rather than the “protocol of validation”. The paper serves as a primer for the types of GT being promoted. It also calls for a public discourse in the academic and general community to uncover and define the ethical guidelines and systemic adjustments necessary to create fairness in the various DTC transactions occurring between genetic test sellers and the buyers/clients of their services.
As described in our Abstract, this paper is mainly about the ethics of marketing Direct-to-Consumer (DTC) genetic tests (GTs). It is descriptive of the genetic test environment, and identifies the main risks and public policy issues raised by DTC GT. Further, it provides a three-step ethical analysis that allows formulating some preliminary recommendations for managers and public policy decision makers. Importantly, the manuscript tries to spark a public discourse among DTC GT companies’ main stakeholders; it also tries to instigate a societal dialogue desperately needed to tackle some of the thorniest ethical challenges raised by this new business practice.
Despite the enormous complexities in accurately inferring practical and/or clinically useful information from a person’s genetic code, the accessibility and marketing of genetic tests (GTs) has been exponentially on the rise (Liu and Pearson 2008; Taylor et al. 2006; Phillips et al. 2018; Delbanco 2018). The global DTC genetic testing market is forecast to grow steadily and to be worth over US$1billion by 2020 (Global Market Insights 2019; Friend et al. 2018) and more than $4 billion by 2025 (PR Newswire 2017). One of the main key drivers of this phenomenal growth has been the dramatic cost/price reduction of testing (Eissenberg 2017; Webborn et al. 2015; Regaldo 2018). While it cost $2.7billion to sequence the first whole human genome, completed in 2001, the price-tag now is less than $2000 and continues to fall (Phillips 2016).
Worldwide, at least 250 companies offer customers DNA tests via mail and/or internet promising everything from locating their ancestors, living healthier lives, finding the right diet, lowering their chances of developing cancer, and discovering their true talents (Friend et al. 2018; Krimsky and Johnston 2017). A typical DTC GT business transaction spans across different jurisdictions, where data collection, data storage, and data analysis are often located in different countries. In most cases, the consumer orders the tests online, the private testing company ships a sample collection kit (e.g., buccal, swab, or blood), and the consumer sends back the sample. The company performs the analysis and provides a test report, sometimes including the raw data, via Internet or mail (Krimsky and Johnston 2017). However, most of the claims made by DTC GT companies go unquestioned by outside reviewers (Nelson and Robinson 2014), unregulated by governmental institutions, and unchecked by ethical considerations. Therefore, a meaningful societal dialogue about the use and abuse of DTC GT is still in its infancy, even as it is desperately needed.
In order to contribute to this dialogue, the primary objectives of this paper are to (1) provide an overview of state-of-the-art DTC GT by integrating a slice of the business and health/medical literature on the topic, (2) describe the type of tests offered and their potential impact for consumers and society, (3) briefly analyze these issues from an ethical perspective with the overarching goal to stimulate societal dialogue about the benefits and perils of DTC GT, and (4) offer consumer-centric, ethics focused, suggestions to companies and regulators.
'You can’t put the genie back in the bottle: on the legal and conceptual understanding of genetic privacy in the era of personal data protection in europe' by Santa Slokenberga in (2021) S1 BioLaw Journal 223-250 comments
This article sheds a light on how the data protection requirements enshrined in the General Data Protection Regulation (GDPR) relate to shaping genetic privacy in the context of a complex and integrated genetic testing enterprise. It suggests that the informational dimension of genetic privacy in the era of data protection could be described as a sphere of controlled access. Given that the GDPR does not prescribe quantitative or contextual limitations relating to access once the applicable requirements are met, one could argue that there are good preconditions for the field to head in the direction of genetic transparency. This puts on the agenda the questions of what challenges this could bring and whether adequate mechanisms exist to deal with them.
'A tidal wave of inevitable data? Assetization in the consumer genomics testing industry' by Susi Geiger and Nicole Gross in (2021) Business & Society comments
We bring together recent discussions on data capitalism and bio-capitalization by studying value flows in consumer genomics firms – an industry at the intersection between healthcare and technology realms. Consumer genomics companies market genomic testing services to consumers as a source of fun, altruism, belonging and knowledge. But by maintaining a multisided or platform business model, these firms also engage in digital capitalism, creating financial profit from data brokerage. This is a precarious balance to strike: If these companies’ business models consist of assetizing the pool of genomic data that they assemble, then part of their work has to revolve around obscuring to consumers any uncertainties that would potentially impinge on these processes of assembly. We reflect on the nature of these practices and the market relationships that enable them, and we relate this reflection to debates around alternative market arrangements that would potentially mitigate the extractive tendencies of these and other digital health firms.
In July 2018, a number of consumer genomics companies - including the industry’s leaders Ancestry.com and 23andMe –signed up to a new data privacy protocol, which had been developed in conjunction with the data activist organization Future of Privacy Forum (FPF) (Romm & Hartwell, 2018). These best practices include provisions for express and fully consented sharing of genomic data with third party organizations (Future of Privacy Forum, 2018). While focusing attention on the firms’ privacy practices, the guidelines remain surprisingly silent of the fact that the commercial “sharing” or sale of genomic data is an intrinsic part of these firms’ business models. Questions of data privacy in consumer genomics are inseparable from questions of data ownership and the profits arising thereof; yet the former has received vastly more research and public attention than the latter.
In this article, we broaden recent discussions on data or platform capitalism as practiced by data-driven technology firms such as Google or Facebook (Langley & Leyshon, 2017; West, 2017) by considering healthcare as a realm that is becoming increasingly entangled with data capitalist business models. As Atkinson, Glasner and Lock (2009, p. 5) point out, the bio- economy “generates a different form of value to that found in the wider economy”, namely value that always entangles economic with social and public concerns. But where and to whom does this economic value accumulate if it goes digital? What are the market arrangements and business models that enable economic value to flow in these so-called digital health industries, and are there any alternatives to the current models?
By locating our inquiry in the consumer genomics industry, we study an industry that has been embroiled in controversies from its earliest days – in Cole and Banerjee’s (2013, p. 555) words, it is “morally contentious”. Social science commentators have raised questions around the mantle of democratization of health insights and clinical research that the consumer genomics industry likes to cover itself with (Prainsack, 2014; Regalado, 2017; Tutton & Prainsack, 2011). The industry has also encountered enduring skepticism from clinicians around the provision of worrying and even misleading information to consumers without the benefit of professional medical support (Rockwell, 2017). Despite these criticisms, judging by the industry’s growth rates (Deloitte 2015), consumer genomics companies seem to have been successful at portraying genomic information as a font of empowerment, belonging and knowledge to consumers (Turrini & Prainsack, 2016).
While alert to these ethical debates, in this article we focus on the processes through which consumer genomic information is turned into assets, which allows these firms to operate on several markets at the same time – consumer, data licensing, venture capital and intellectual property markets. Following Birch (2017, p. 463), we define assets as “resources that generate recurring earnings”. We contend that for consumer genomics firms’ business models to work, there is a precarious balance to strike: If these companies aim to assetize the pool of genomic information that they assemble, then part of their work has to revolve around assuring an uninterrupted flow of data that can be turned into assets. We claim that this is done through three interlinked processes: of first accumulating consumer data; secondly, maintaining and augmenting it; and thirdly obscuring to consumers any uncertainties that would potentially impinge on first two processes. In tracing the value flows in this industry, we thus examine the practices that these companies engage in with regard to assetizing genomic information. More broadly, we argue that the move to assetization presents a major conceptual shift for firms that operate broadly in the healthcare realm. Conceptually, we combine theories of biocapital and data capitalism to analytically grasp and critique these processes of assetization.
While our argument is conceptually driven, we draw on several empirical sources to inform our analysis: We examine genomic firms’ business models and market relationships through an analysis of their marketing collateral and websites, and we support this analysis through documents published either by the firms themselves or by technology journalists and analysts. We complement these documentary sources through eight interviews with industry insiders. Our investigation remains on the producer side – we study how consumer genomics firms “act in markets to affect what is valued and how it is valued” (Aspers & Beckert, 2011, p. 23), not how this value is perceived and realized by the consumer. Though we focus predominantly on economic value flows, we fully acknowledge that there are various values at play – ethical, social, and individual. Yet, as Rose and Novas (2005) point out, in markets these are often conflated with or even turned into “marketable assets” themselves. Comparing our findings with extant research, we discuss the “inevitability” of the private accumulation of economic value from consumer genomic data, to which our title refers, and we point to debates around alternative market arrangements in consumer genomics and the broader bio-economy. With this reflection we contribute to discussions on valuation and assetization practices at the intersection of individual, healthcare and commercial realms (Dussauge et al., 2015; Poitras & Meredith, 2009). We also add to an emerging literature scrutinizing the intersection of digital technology and healthcare practices in so-called digital health industries (Geiger & Gross, 2017; Fiore-Gartland & Neff, 2016; Saukko, 2018). Most fundamentally, our argument speaks to Birch’s (2017) question of what gets valued and how this is done in the bio-economy.
Our article proceeds as follows. The next section introduces three strands of literature around “capitalisms” - bio-, data- and platform - bringing insights from the practices researchers have identified in data and platform capitalist firms into debates around biocapitalization. After briefly presenting our analytical approach, we use these conceptual foundations to first analyze the four value flows we have identified as constituent parts of a typical consumer genomic business model. We then explore 15 direct-to-consumer genomic testing firms’ marketing strategies to establish how these firms endeavor to create and maintain the “tidal flow” of data that underlies these value flows. Our Discussion summarizes our analysis before moving to build a research agenda for future research, centering on debates around conceiving alternative market mechanisms in the consumer genomics and related digital health industries.
'‘Your DNA Is One Click Away’: The GDPR and Direct-to-Consumer Genetic Testing' by Miriam C. Buiten in Klaus Mathis and Avishalom Tor (eds) Consumer Law and Economics (Springer, 2020) 205-223 comments
In the last decade, a wide variety of direct-to-consumer (DTC) genetic tests has become available that allow consumers to learn about their ancestry, genetic traits and propensity to genetic diseases. DTC genetic testing companies encourage consumers to share their data for research purposes. The reason is that these companies operate on two-sided business models, generating revenue primarily through selling genetic data to pharmaceuticals and research institutions. This chapter considers possible reasons for concern about consumers sharing their genetic data. It discusses various market failures that may arise in this two-sided market, ranging from information asymmetries to externalities and market power. This chapter asks whether the General Data Protection Regulation (GDPR) is able to mitigate these market failures, or whether specific laws for genetic data processing are in order. This chapter concludes that the broad research exemption in the GDPR leaves a regulatory vacuum for DTC genetic testing companies and biobanks alike.
