“DNA screening for the important moments in life” [1], “Unwrap you. Celebrate your holiday with the gift of knowledge” [2]. These are only two of the latest examples of promising slogans to be found on websites of DTC GT companies. They suggest genetic information as a special present and DNA screening as a means of achieving a better life. Commercially offered genetic tests, so-called direct-to-consumer genetic test (DTC GT), pose a growing and dynamic market in countries with permissive legislation concerning genetic testing [3]. Faster and much cheaper technology, such as high throughput sequencing and growing databanks of hereditary markers, now make it technically possible for more and more companies to offer and advertise tests for a variety of purposes. These tests range from testing for predisposition to common complex diseases, diagnostics of genetic traits for food intolerances and testing for carrier status of rare genetic diseases to paternity and ancestry tests. The business of DTC GT is typically based on marketing via the companies’ websites, where consumers find information and can order test kits to submit a saliva sample for analysis. Test results are then accessible in a password-secured section of the website. Since the website is the main source of information and the virtual location for ordering a test kit and accessing results, we will, in our following analysis, focus on this medium. However, main lines of our argumentation may also apply to traditional forms of advertising for DTC GT.
The current controversy surrounding DTC GT mainly focuses on health-related tests in a narrow sense, i.e. tests for genetic disorders, risk prediction for common complex disease and carrier status [4]. Ancestry or food allergy tests have gained less attention [5]. The spectrum of concerns includes individual possible psychological harm [6], lack of professional counselling [7], lacking data protection and opaque data protection policies [8] and lacking validity and clinical utility of test results [9, 10]. For example, doubts were raised about the validity of tests making risk predictions based on single nucleotide polymorphisms (SNPs). Also it has been problematized that different companies provide different risk estimates for individuals based on the same methods [11, 12]. Some recent empirical studies have shown that risk information obtained via DTC GT has little influence on changes in health-related behavior [11, 13, 14]. Such findings bolster worries about over-interpretation of health risk information but also lessen the hopes associated with preventive measures or life style changes. Furthermore, there is a worry that lay persons misinterpret the provided information [15, 16]. In sum, more research is necessary to elucidate how the results of DTC GT are perceived by users and what effects they have on them [17].
Regarding the communication practices of DTC GT providers, a systematic review by Covolo et al. [18] concluded that companies emphasize positive aspects of their service in terms of individual empowerment, while dangers and disadvantages (genetic discrimination, emotional burdens) are widely neglected. Most of the 16 studies of the review dealing with DTC GT websites and their content were based on content analysis and quality checks of websites on the provided genetic counselling procedures and the descriptions of risks, benefits and limitations of genetic tests. Marketing strategies, they conclude, overemphasize the positive aspects of the product and the role of genes as a cause of disease. The authors further conclude that it would be important for future policy making to better understand the communicative strategies “that explain how communication can be used to manipulate the beliefs and attitudes of consumers”. However, the studies reviewed mainly focused narrowly on the writing/language-based procedure of information transmission (e.g. [19]). Therefore, they conclude that this communication process could be optimized with more comprehensive, more accurate, more balanced and generally more information to counter these deficiencies. Thus, deficits of information in terms of quality, content and comprehensiveness seem to be regarded as a main problem and a leading rationale of criticism. Following this line of argumentation, some studies now suggest to vary presentation modes to improve the understanding and perception of risks [11, 20, 21]. The improvement of communication is here seen in a change of presentation modes of content, presupposing content is accurate and comprehensive. Shaer et al., for example suggest that genetic risk reports should be presented in the form of “interactive bubble charts”, a special visual display mode that accounts for different items simultaneously [21]. While such efforts are generally desirable, they do not account for problems that may arise from the content itself. For example, it is not helpful if content is better understood when the content is actually inaccurate or in some way misleading. In summary, the current debate tends to focus on what is perceived as lacking in DTC GT companies’ communication and policy. To our understanding it hasn’t yet focused on the ethical implications of the persuasive appeals in DTC GT companies’ communication, existing apart from questions around validity and utility of test results. This also includes the aspect of indirect / impersonal one-way online communication.
In this article, we will therefore highlight a frequently addressed aspect that has not been fully explored in recent criticism of DTC GT, namely the role of advertising (i.e. persuasive communication efforts including images) of companies who operate in this field, from an ethical perspective. Our leading research question is: what are main ethical aspects of communicative means and messages of DTC GT companies? We start by problematizing the use of such means in the field of commercialized medical practice as such by referring to a normative standpoint of medical ethics. In doing so, we want to broaden the ethical perspective for analyzing the general effects of such commercialization in genetics and medicine. Furthermore, we provide an example analysis of morally problematic messages induced by commercial advertisements of such tests by analyzing website messages of DTC GT. Finally, we will conclude that simple approaches of content analysis or quality checks of DTC GT websites fall short in capturing the specific quality of the medium and the persuasive appeals of advertising content, and that ethical analysis of DTC GT should be sensitive to those means of persuasion and their implications. In the following, we examine how the form of communication related to DTC GT poses fundamental ethical challenges because of its online and commercial character. We want to critically revise the idea that providing more comprehensive and balanced information is the solution to all ethical problems of DTC GT regarding its communication and information aspects, as the problems go beyond these issues. We start with a reflection on economization and commercialization in the health care context, and subsequently on how these phenomena affect communication practice.
Normative frameworks of communication in medicine and market contexts
In the following, we want to introduce an analytical distinction of communication principles as defined for medicine/health care and for the market. In practice, of course, there is and always has been a tremendous overlap: in many health care systems of the world, medical care is not free of market principles [22]. However, health economists as well as ethicists have pointed out that there is some tension between the market and healthcare [23, 24] as they ideally mark two poles on the practical spectrum. Our focus is mainly on the role of communication in both areas and how there are ethically relevant consequences when the market and medicine overlap.
Within medicine, communication serves patient information. Furthermore, communication can be seen as a trust-building mechanism for a good doctor-patient relationship [25]. In current concepts of shared decision-making it is the crucial means to ensure that facts and values are exchanged and a decision is based on a joint agreement [26]. Overall, communication can be understood as the main condition to transform a traditional, paternalistic form of professional ethics in which the professional reasons and decides on his/her own into a modern version of a relationship based on contractualistic or deliberative assumptions [27]. Today, communication is seen as core part of professional conduct in the area of medicine: from the ancient ideal of doctor-patient confidentiality to the modern concept of informed consent and counselling procedures, medical professional norms and ethical standards value comprehensive, trustful and objective communication as a cornerstone of a good doctor-patient relationship [25].
Concerning the modern principles of medical ethics, communication serves the purpose of supporting the affected person’s autonomous decision-making. Thus, it is supposed to cover all relevant information, especially about meaning, nature and consequences of the procedures. In the case of genetic counselling, additional requirements are in place, since genetic information, especially risk information, can have severe consequences for an individual in terms of personal well-being and life-planning. Here, the additional claim is made that a realistic picture of chances, risks and utility of genetic testing and its results should be drawn [28, 29]. Generally speaking, the communication in this context should provide comprehensive and truthful information in order to put patients or research participants in a position where they can make a well-informed decision (legally defined as informed consent) based on the knowledge of possible consequences of their decision. Further, the aspect of non-directiveness is crucial to genetic counselling which may be historically explained as a compensation reaction to abusive practices in human genetics. It has been suggested that it reflects a wish of medical professionals to distance themselves from their clients’ decisions, especially when it comes to delicate cases of reproductive decision-making [30, 31], and that there is also an economic risk for individual doctors or medical institutions, when they are held responsible for certain consequences of decisions they advised [32]. Non-directiveness thus means that professionals do not provide personal opinions or advice for decision-making as it might be common and expected by patients in many other areas of health care. The appropriateness and factual application of a non-directive approach in genetic counselling is nonetheless a matter of debate and a shared decision-making model may be more suitable. However, the aim of genetic counselling, even though operating with attempts to influence clients in certain situations, would remain in line with their best interest [33]. Particularly, it is this latter aspect of communication that deserves special attention when it comes to DTC GT. Some empirical studies have shown that non-directiveness is not necessarily a reality in actual counselling practice [34] yet it persists as moral ideal that is still paradigmatic in many respective guidelines and recommendations like the UN declaration on human genetic data, the code of ethics of the National Society of Genetic Counselors in the US or the Guidelines of the German Society for Human Genetics (GfH) [28, 35, 36]. Even though this ideal may change with the changing role of genetics in medicine [37] it is important to recognize that it is absent in DTC GT and that in a commercial context there is a clear directive interest. Another important reason why commercial genetic testing deserves special attention is the exceptional nature of genetic data: first, genetic risk information is probabilistic in nature and includes a strong element of uncertainty. The status of such data, in terms of clinical utility, is thus not clear; second, genetic information is not only individual information, as it refers to the genetic make-up also shared by relatives who may be subject to the effects of “knowing” their DNA as well.
On the other hand, communication in the market sphere is characterized by a less distinct ethical framework. However, there are laws and regulations directly or indirectly serving consumer protection in the EU and the US. In the US, DTC genetic tests may be freely advertised if approved by the Federal Food and Drug Administration (FDA) [38]. Apart from varying national regulations, a EU-wide regulation is currently underway. The initial draft intended to ban DTC advertising of genetic tests but the final version includes restrictions on advertising of genetic tests such as a prohibition of false claims about the product’s properties and withholding associated risks [39].
Also, the advertising industry itself has established few ethical guidelines. Lying and cheating is regarded as morally unacceptable and in many circumstances also legally problematic. However, advertisement and the presentation of imbalanced information is regarded as a constitutional part of market communication. Standards do exist that require companies to provide truthful product information in their advertising as well as in the labeling of their products [40]. There is, however, no direct equivalent to the principles of biomedical ethics in commercial communication. Instead, voluntary initiatives of the advertising industry such as the Advertising Self-Regulatory Council in the US or the German Advertising Standards Council (Deutscher Werberat) are in place. These voluntary commitments of the economy provide guidelines and serve as a means of self-regulation. Yet (at least in Germany) together with laws regulating competition and the competing market players, they form a regulatory structure with a form of inherent ethics that is maintained by different stakeholder groups [41]. Thus, commitments of the industry as well as legal restrictions set limits to what is allowed in advertising. The nature of advertising as a type of communication directed at influencing behavior of the targeted individuals, however, is not touched by such efforts. This significantly differs from the ethical framework in medicine where communication directed at patients should comply to the principle of respect for autonomy [42]. Consequently, advertising as a form of communication in medicine immediately becomes ethically problematic, as individuals should not be manipulated in their decision-making.Footnote 1 We therefore assume that the market and medicine are seen as contrary parts on the spectrum of provision of mecical goods. This assumption is further supported by the fact that all countries except for the US and New Zealand have banned advertising of prescription drugs and medical devices [44]. In the case of the US we may assume it to be an expression of a cultural orientation towards individual self-responsibility (not only) for health and a strong tradition of a liberal economy.
Normative frameworks codifying communication therefore exist in both fields. To sum it up, the medical profession should communicate on the basis of its commitment to the autonomy and beneficence of patients [45, 46]. Since genetic risk information can have a severe psychological impact on at-risk individuals the principle of non-maleficence has turned out to be relevant for the communication processes of genetic counselling as well [26]. Our argument points therefore at the tension between persuasive efforts in advertising as common in market communication and the medico-ethical communication ideals.
Persuasive communication in direct-to-consumer advertising
What are the implications when genetic tests are offered as a consumer’s good on the free market and yet are not or only marginally embedded in the current medical ethical framework? A special focus should be given to the advertisement character and its ethical implications. As explained above, the main principles of the market require that products and services are advertised for the sake of increasing sales numbers and thus serve the main interest of the salesperson. Commercial websites hint at products or services but also present an interactive platform for communication and financial transactions that represents their company. It is therefore important to have a closer look at their content and structure: following common design principles of commercial websites, the key product is usually advertised as the central content on the main page and the purchase interface is just one click away. Supplementary content such as navigation links allow users to navigate to other subpages of the website with additional content and features.
Among various definitions of advertising, one can derive a common understanding that it is intentional communication aimed at behavior changes of the recipients, for the purpose of distributing a product. Based on insights from the field of psychology, the behavioral changes are achieved by changing attitudes or self-images of the consumers and creating desires [47, 48]. We call this its persuasive character, which is based in the utilization of rational and/or arational means [49,50,51].Footnote 2
The idea of products and services being advertised by providers that compete for consumer attention is a given fact in modern western societies. Advertising is not only a significant sector of business activities but also an area of extensive research in various disciplines and an important cultural phenomenon of modern societies [48, 50]. However, this type of communication raises general concerns with regard to its legitimacy and ethical implications [50, 52,53,54]. Discussions revolve around the relationship between ends and means of communication, assuming that the means used to achieve certain ends affect the quality and nature of those ends [54].
Advertising operates with a set of seductive qualities and uses techniques from social psychology like priming and evaluative conditioning, methods of influencing attitudes and opinions. Biegler [55, 56] provides an example that shows the use of such techniques in marketing of medical products and how they produce false or inaccurate beliefs. The pairing of information with positive images, for example, lead participants in a study to believe that a drug is “safer, more effective, and more beneficial”, a belief which did not occur in the control group. In another study, Biegler & Vargas examined the effect of images in DTC advertisement for prescription drugs. They state that images can be seen as arational, emotional or even manipulative means, concluding that the used imagery caused viewers to hold beliefs that are explicitly denied in the very same commercial. They identify a bias in US legislation regarding pharmaceuticals toward “propositional content”, meaning concrete presentations of facts about a product. In contrast, “nonpropositional content”, consistent of images, audio and other content, is being disregarded even though it is an important part of the message. They propose to further examine the medial quality of advertisement to be able to assess its ethical dimension: “more research and debate are needed to determine the permissibility of this and other forms of nonpropositional persuasion” [57]. The term ‘nonpropositional content’ seems problematic to the extent to which it literally dismisses the idea that images contain messages, while the conceptional use of the term claims the opposite. The term “implicitly propositional content” may therefore be more suitable to capture the actual meaning of it, maintaining the notion of suggestive character.
The use of subtle persuasion techniques, according to Biegler, undermines patient autonomy and raises doubt whether such advertisement should be restricted. Here lies an important distinction from the concept of nudging. In the medical field, nudging refers to attempts to drive choice in a beneficial direction while preserving autonomy, qualifying this action as a form of libertarian paternalism, an action for the own good of the patient [58].
From an ethical point of view, it is especially problematic that to some degree, the induction of false beliefs may be intended by commercial providers. The occasional and sometimes willful induction of false beliefs can be described as a manipulative action that potentially infringes on the autonomy of recipients. Their own ability to reason and judge independently is being compromised since they do not necessarily become aware of how their attitudes and, consequently, their decision-making are influenced in subtle ways [50, 51, 59]. Thus, it may be expected that advertising uses all means legally available in order to achieve the desired effect, even though ethical permissibility remains questionable, at least in those cases where advertising makes use of emotional appeals not in line with the recipients’ original needs [50].
When we transfer these general considerations to the context of DTC GT we can conclude that websites of DTC GT companies do not provide neutral technical information but contain many messages that classify as advertisement [60]. Websites as a medium are particularly of interest here, as they not only consist of the presentation of text but especially of their visual makeup. This multi-modality adds to the complexity of media messages and requires appropriate methodologies as held, for example, by a social semiotics approach and modern cultural studies [61,62,63] which we also used for our brief case study (see below). Our analysis, therefore, goes beyond a simplistic content analysis of texts.
It is noteworthy here that another aspect of DTC GT websites is ethically relevant which is related to the medium itself. The communication and handling of information is different in interaction with a commercial website than it is in a genetic counselling process. The face-to-face communication in genetic counselling requires a certain amount of time, effort and attention which ensures, at least to some extent, mutual understanding and a careful decision-making process. The counselor can adapt to the clients’ needs and questions appropriately and the character of the procedure is serious. The online purchase requires no such efforts and consumers are more likely to just rush through the process. Terms and conditions of the service may be perceived as mere obstacles and just ignored and avoided by checking a box. The seductive quality of virtual buttons [64] tempts users to just click through and reach the end of the ordering process. In sum, the entire media context and the content of a commercial website reframes undergoing genetic testing as a quick and easy consumer goods purchase and thus disregards the special qualities and potential implications of such procedures (cf [65]).
