Medicine, market and communication: ethical considerations in regard to persuasive communication in direct-to-consumer genetic testing services

Medicine, market and communication: ethical considerations in regard to persuasive communication... Background: Commercial genetic testing offered over the internet, known as direct-to-consumer genetic testing (DTC GT), currently is under ethical attack. A common critique aims at the limited validation of the tests as well as the risk of psycho-social stress or adaption of incorrect behavior by users triggered by misleading health information. Here, we examine in detail the specific role of advertising communication of DTC GT companies from a medical ethical perspective. Our argumentative analysis departs from the starting point that DTC GT operates at the intersection of two different contexts: medicine on the one hand and the market on the other. Both fields differ strongly with regard to their standards of communication practices and the underlying normative assumptions regarding autonomy and responsibility. Methods: Following a short review of the ethical contexts of medical and commercial communication, we provide case examples for persuasive messages of DTC GT websites and briefly analyze their design with a multi-modal approach to illustrate some of their problematic implications. Results: We observe three main aspects in DTC GT advertising communication: (1) the use of material suggesting medical professional legitimacy as a trust-establishing tool, (2) the suggestion of empowerment as a benefit of using DTC GT services and (3) the narrative of responsibility as a persuasive appeal to a moral self-conception. Conclusions: While strengthening and respecting the autonomy of a patient is the focus in medical communication, specifically genetic counselling, persuasive communication is the normal mode in marketing of consumer goods, presuming an autonomous, rational, independent consumer. This creates tension in the context of DTC GT regarding the expectation and normative assessment of communication strategies. Our analysis can even the ground for a better understanding of ethical problems associated with intersections of medical and commercial communication and point to perspectives of analysis of DTC GT advertising. Keywords: Direct-to-consumer genetic testing, Communication ethics, Advertising, Genetic Counselling, Persuasive communication * Correspondence: manuel.schaper@medizin.uni-goettingen.de Department of Medical Ethics and History of Medicine, University Medical Center Göttingen, Humboldtallee 36, 37073 Göttingen, Germany © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 2 of 11 Background Regarding the communication practices of DTC GT “DNA screening for the important moments in life” [1], providers, a systematic review by Covolo et al. [18] con- “Unwrap you. Celebrate your holiday with the gift of cluded that companies emphasize positive aspects of knowledge” [2]. These are only two of the latest examples their service in terms of individual empowerment, while of promising slogans to be found on websites of DTC GT dangers and disadvantages (genetic discrimination, emo- companies. They suggest genetic information as a special tional burdens) are widely neglected. Most of the 16 present and DNA screening as a means of achieving a bet- studies of the review dealing with DTC GT websites and ter life. Commercially offered genetic tests, so-called their content were based on content analysis and quality direct-to-consumer genetic test (DTC GT), pose a grow- checks of websites on the provided genetic counselling ing and dynamic market in countries with permissive le- procedures and the descriptions of risks, benefits and gislation concerning genetic testing [3]. Faster and much limitations of genetic tests. Marketing strategies, they cheaper technology, such as high throughput sequencing conclude, overemphasize the positive aspects of the and growing databanks of hereditary markers, now make product and the role of genes as a cause of disease. The it technically possible for more and more companies to authors further conclude that it would be important for offer and advertise tests for a variety of purposes. These future policy making to better understand the communi- tests range from testing for predisposition to common cative strategies “that explain how communication can complex diseases, diagnostics of genetic traits for food in- be used to manipulate the beliefs and attitudes of con- tolerances and testing for carrier status of rare genetic dis- sumers”. However, the studies reviewed mainly focused eases to paternity and ancestry tests. The business of DTC narrowly on the writing/language-based procedure of in- GT is typically based on marketing via the companies’ formation transmission (e.g. [19]). Therefore, they con- websites, where consumers find information and can clude that this communication process could be order test kits to submit a saliva sample for analysis. Test optimized with more comprehensive, more accurate, results are then accessible in a password-secured section more balanced and generally more information to coun- of the website. Since the website is the main source of in- ter these deficiencies. Thus, deficits of information in formation and the virtual location for ordering a test kit terms of quality, content and comprehensiveness seem and accessing results, we will, in our following analysis, to be regarded as a main problem and a leading rationale focus on this medium. However, main lines of our argu- of criticism. Following this line of argumentation, some mentation may also apply to traditional forms of advertis- studies now suggest to vary presentation modes to improve ing for DTC GT. the understanding and perception of risks [11, 20, 21]. The The current controversy surrounding DTC GT mainly improvement of communication is here seen in a change focuses on health-related tests in a narrow sense, i.e. of presentation modes of content, presupposing content is tests for genetic disorders, risk prediction for common accurate and comprehensive. Shaer et al., for example sug- complex disease and carrier status [4]. Ancestry or food gest that genetic risk reports should be presented in the allergy tests have gained less attention [5]. The spectrum form of “interactive bubble charts”, a special visual display of concerns includes individual possible psychological mode that accounts for different items simultaneously [21]. harm [6], lack of professional counselling [7], lacking While such efforts are generally desirable, they do not ac- data protection and opaque data protection policies [8] count for problems that may arise from the content itself. and lacking validity and clinical utility of test results [9, For example, it is not helpful if content is better under- 10]. For example, doubts were raised about the validity stood when the content is actually inaccurate or in some of tests making risk predictions based on single nucleo- way misleading. In summary, the current debate tends to tide polymorphisms (SNPs). Also it has been problema- focus on what is perceived as lacking in DTC GT compan- tized that different companies provide different risk ies’ communication and policy. To our understanding it estimates for individuals based on the same methods hasn’t yet focused on the ethical implications of the persua- [11, 12]. Some recent empirical studies have shown that sive appeals in DTC GT companies’ communication, exist- risk information obtained via DTC GT has little influ- ing apart from questions around validity and utility of test ence on changes in health-related behavior [11, 13, 14]. results. This also includes the aspect of indirect / imper- Such findings bolster worries about over-interpretation sonal one-way online communication. of health risk information but also lessen the hopes In this article, we will therefore highlight a frequently associated with preventive measures or life style changes. addressed aspect that has not been fully explored in re- Furthermore, there is a worry that lay persons cent criticism of DTC GT, namely the role of advertising misinterpret the provided information [15, 16]. In sum, (i.e. persuasive communication efforts including images) more research is necessary to elucidate how the results of companies who operate in this field, from an ethical of DTC GT are perceived by users and what effects they perspective. Our leading research question is: what are have on them [17]. main ethical aspects of communicative means and Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 3 of 11 messages of DTC GT companies? We start by problem- assumptions [27]. Today, communication is seen as atizing the use of such means in the field of commercial- core part of professional conduct in the area of medi- ized medical practice as such by referring to a normative cine: from the ancient ideal of doctor-patient confi- standpoint of medical ethics. In doing so, we want to dentiality to the modern concept of informed consent broaden the ethical perspective for analyzing the general and counselling procedures, medical professional effects of such commercialization in genetics and medi- norms and ethical standards value comprehensive, cine. Furthermore, we provide an example analysis of trustful and objective communication as a cornerstone morally problematic messages induced by commercial of a good doctor-patient relationship [25]. advertisements of such tests by analyzing website mes- Concerning the modern principles of medical ethics, sages of DTC GT. Finally, we will conclude that simple communication serves the purpose of supporting the approaches of content analysis or quality checks of DTC affected person’s autonomous decision-making. Thus, GT websites fall short in capturing the specific quality of it is supposed to cover all relevant information, espe- the medium and the persuasive appeals of advertising cially about meaning, nature and consequences of the content, and that ethical analysis of DTC GT should be procedures. In the case of genetic counselling, add- sensitive to those means of persuasion and their implica- itional requirements are in place, since genetic infor- tions. In the following, we examine how the form of mation, especially risk information, can have severe communication related to DTC GT poses fundamental consequences for an individual in terms of personal ethical challenges because of its online and commercial well-being and life-planning. Here, the additional character. We want to critically revise the idea that pro- claim is made that a realistic picture of chances, risks viding more comprehensive and balanced information is and utility of genetic testing and its results should be the solution to all ethical problems of DTC GT regard- drawn [28, 29]. Generally speaking, the communica- ing its communication and information aspects, as the tion in this context should provide comprehensive problems go beyond these issues. We start with a reflec- and truthful information in order to put patients or tion on economization and commercialization in the research participants in a position where they can health care context, and subsequently on how these phe- make a well-informed decision (legally defined as in- nomena affect communication practice. formed consent) based on the knowledge of possible consequences of their decision. Further, the aspect of Normative frameworks of communication in medicine non-directiveness is crucial to genetic counselling and market contexts which may be historically explained as a compensa- In the following, we want to introduce an analytical dis- tion reaction to abusive practices in human genetics. tinction of communication principles as defined for It has been suggested that it reflects a wish of med- medicine/health care and for the market. In practice, of ical professionals to distance themselves from their course, there is and always has been a tremendous over- clients’ decisions, especially when it comes to delicate lap: in many health care systems of the world, medical cases of reproductive decision-making [30, 31], and care is not free of market principles [22]. However, that there is also an economic risk for individual doc- health economists as well as ethicists have pointed out tors or medical institutions, when they are held re- that there is some tension between the market and sponsible for certain consequences of decisions they healthcare [23, 24] as they ideally mark two poles on the advised [32]. Non-directiveness thus means that pro- practical spectrum. Our focus is mainly on the role of fessionals do not provide personal opinions or advice communication in both areas and how there are ethic- for decision-making as it might be common and ex- ally relevant consequences when the market and medi- pected by patients in many other areas of health care. cine overlap. The appropriateness and factual application of a Within medicine, communication serves patient in- non-directive approach in genetic counselling is none- formation. Furthermore, communication can be seen theless a matter of debate and a shared as a trust-building mechanism for a good decision-making model may be more suitable. How- doctor-patient relationship [25]. In current concepts ever, the aim of genetic counselling, even though op- of shared decision-making it is the crucial means to erating with attempts to influence clients in certain ensure that facts and values are exchanged and a de- situations, would remain in line with their best inter- cision is based on a joint agreement [26]. Overall, est [33]. Particularly, it is this latter aspect of commu- communication can be understood as the main condi- nication that deserves special attention when it comes tion to transform a traditional, paternalistic form of to DTC GT. Some empirical studies have shown that professional ethics in which the professional reasons non-directiveness is not necessarily a reality in actual and decides on his/her own into a modern version of counselling practice [34] yet it persists as moral ideal a relationship based on contractualistic or deliberative that is still paradigmatic in many respective guidelines Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 4 of 11 and recommendations like the UN declaration on hu- communication directed at influencing behavior of the man genetic data, the code of ethics of the National targeted individuals, however, is not touched by such ef- Society of Genetic Counselors in the US or the forts. This significantly differs from the ethical frame- Guidelines of the German Society for Human Genet- work in medicine where communication directed at ics (GfH) [28, 35, 36]. Even though this ideal may patients should comply to the principle of respect for change with the changing role of genetics in medicine autonomy [42]. Consequently, advertising as a form of [37]it is important to recognizethatit is absentin communication in medicine immediately becomes DTC GT and that in a commercial context there is a ethically problematic, as individuals should not be clear directive interest. Another important reason why manipulated in their decision-making. We therefore commercial genetic testing deserves special attention assume that the market and medicine are seen as is the exceptional nature of genetic data: first, genetic contrary parts on the spectrum of provision of meci- risk information is probabilistic in nature and in- cal goods. This assumption is further supported by cludes a strong element of uncertainty. The status of the fact that all countries except for the US and such data, in terms of clinical utility, is thus not New Zealand have banned advertising of prescription clear; second, genetic information is not only individ- drugs and medical devices [44]. In the case of the ual information, as it refers to the genetic make-up US we may assume it to be an expression of a cul- also shared by relatives who may be subject to the ef- tural orientation towards individual self-responsibility fects of “knowing” their DNA as well. (not only) for health and a strong tradition of a lib- On the other hand, communication in the market eral economy. sphere is characterized by a less distinct ethical frame- Normative frameworks codifying communication work. However, there are laws and regulations directly therefore exist in both fields. To sum it up, the medical or indirectly serving consumer protection in the EU and profession should communicate on the basis of its com- the US. In the US, DTC genetic tests may be freely ad- mitment to the autonomy and beneficence of patients vertised if approved by the Federal Food and Drug Ad- [45, 46]. Since genetic risk information can have a severe ministration (FDA) [38]. Apart from varying national psychological impact on at-risk individuals the principle regulations, a EU-wide regulation is currently underway. of non-maleficence has turned out to be relevant for the The initial draft intended to ban DTC advertising of communication processes of genetic counselling as well genetic tests but the final version includes restrictions [26]. Our argument points therefore at the tension be- on advertising of genetic tests such as a prohibition of tween persuasive efforts in advertising as common in false claims about the product’s properties and withhold- market communication and the medico-ethical commu- ing associated risks [39]. nication ideals. Also, the advertising industry itself has established few ethical guidelines. Lying and cheating is regarded as morally unacceptable and in many circumstances also le- Persuasive communication in direct-to-consumer gally problematic. However, advertisement and the pres- advertising entation of imbalanced information is regarded as a What are the implications when genetic tests are of- constitutional part of market communication. Standards fered as a consumer’s good on the free market and do exist that require companies to provide truthful prod- yet are not or only marginally embedded in the uct information in their advertising as well as in the la- current medical ethical framework? A special focus beling of their products [40]. There is, however, no should be given to the advertisement character and direct equivalent to the principles of biomedical ethics its ethical implications. As explained above, the main in commercial communication. Instead, voluntary initia- principles of the market require that products and tives of the advertising industry such as the Advertising services are advertised for the sake of increasing sales Self-Regulatory Council in the US or the German numbers and thus serve the main interest of the Advertising Standards Council (Deutscher Werberat) are salesperson. Commercial websites hint at products or in place. These voluntary commitments of the economy services but also present an interactive platform for provide guidelines and serve as a means of communication and financial transactions that repre- self-regulation. Yet (at least in Germany) together with sents their company. It is therefore important to have laws regulating competition and the competing market a closer look at their content and structure: following players, they form a regulatory structure with a form of common design principles of commercial websites, inherent ethics that is maintained by different stake- the key product is usually advertised as the central holder groups [41]. Thus, commitments of the industry content on the main page and the purchase interface as well as legal restrictions set limits to what is allowed is just one click away. Supplementary content such as in advertising. The nature of advertising as a type of navigation links allow users to navigate to other Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 5 of 11 subpages of the website with additional content and the opposite. The term “implicitly propositional content” features. may therefore be more suitable to capture the actual Among various definitions of advertising, one can meaning of it, maintaining the notion of suggestive derive a common understanding that it is intentional character. communication aimed at behavior changes of the re- The use of subtle persuasion techniques, according cipients, for the purpose of distributing a product. to Biegler, undermines patient autonomy and raises Based on insights from the field of psychology, the doubt whether such advertisement should be re- behavioral changes are achieved by changing attitudes stricted. Here lies an important distinction from the or self-images of the consumers and creating desires concept of nudging. In the medical field, nudging re- [47, 48]. We call this its persuasive character, which fers to attempts to drive choice in a beneficial direc- is based in the utilization of rational and/or arational tion while preserving autonomy, qualifying this action means [49–51]. as a form of libertarian paternalism, an action for the The idea of products and services being advertised own good of the patient [58]. by providers that compete for consumer attention is a From an ethical point of view, it is especially prob- givenfactin modernwestern societies. Advertising is lematicthattosomedegree, theinduction of false not only a significant sector of business activities but beliefs may be intended by commercial providers. The also an area of extensive research in various disci- occasional and sometimes willful induction of false plines and an important cultural phenomenon of beliefs can be described as a manipulative action that modern societies [48, 50]. However, this type of com- potentially infringes on the autonomy of recipients. munication raises general concerns with regard to its Their own ability to reason and judge independently legitimacy and ethical implications [50, 52–54]. Dis- is being compromised since they do not necessarily cussions revolve around the relationship between ends become aware of how their attitudes and, conse- and means of communication, assuming that the quently, their decision-making are influenced in subtle means used to achieve certain ends affect the quality ways [50, 51, 59]. Thus, it may be expected that ad- and nature of those ends [54]. vertising uses all means legally available in order to Advertising operates with a set of seductive qualities achieve the desired effect, even though ethical permissibil- and uses techniques from social psychology like priming ity remains questionable, at least in those cases where ad- and evaluative conditioning, methods of influencing atti- vertising makes use of emotional appeals not in line with tudes and opinions. Biegler [55, 56] provides an example the recipients’ original needs [50]. that shows the use of such techniques in marketing of When we transfer these general considerations to the medical products and how they produce false or inaccur- context of DTC GT we can conclude that websites of ate beliefs. The pairing of information with positive im- DTC GT companies do not provide neutral technical in- ages, for example, lead participants in a study to believe formation but contain many messages that classify as ad- that a drug is “safer, more effective, and more beneficial”, vertisement [60]. Websites as a medium are particularly a belief which did not occur in the control group. In an- of interest here, as they not only consist of the presenta- other study, Biegler & Vargas examined the effect of im- tion of text but especially of their visual makeup. This ages in DTC advertisement for prescription drugs. They multi-modality adds to the complexity of media mes- state that images can be seen as arational, emotional or sages and requires appropriate methodologies as held, even manipulative means, concluding that the used im- for example, by a social semiotics approach and modern agery caused viewers to hold beliefs that are explicitly cultural studies [61–63] which we also used for our brief denied in the very same commercial. They identify a bias case study (see below). Our analysis, therefore, goes be- in US legislation regarding pharmaceuticals toward yond a simplistic content analysis of texts. “propositional content”, meaning concrete presentations It is noteworthy here that another aspect of DTC GT of facts about a product. In contrast, “nonpropositional websites is ethically relevant which is related to the content”, consistent of images, audio and other content, medium itself. The communication and handling of in- is being disregarded even though it is an important part formation is different in interaction with a commercial of the message. They propose to further examine the website than it is in a genetic counselling process. The medial quality of advertisement to be able to assess its face-to-face communication in genetic counselling re- ethical dimension: “more research and debate are needed quires a certain amount of time, effort and attention to determine the permissibility of this and other forms of which ensures, at least to some extent, mutual under- nonpropositional persuasion” [57]. The term ‘nonpropo- standing and a careful decision-making process. The sitional content’ seems problematic to the extent to counselor can adapt to the clients’ needs and questions which it literally dismisses the idea that images contain appropriately and the character of the procedure is ser- messages, while the conceptional use of the term claims ious. The online purchase requires no such efforts and Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 6 of 11 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 vir- tual 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 spe- cial qualities and potential implications of such proce- dures (cf [65]). Methods As we have argued above, DTC GT websites can be understood as a form of advertising that is likely to be using persuasive communication techniques including visual material to influence consumer perceptions and, Fig. 1 Use of imagery of medical professionals. http:// in consequence, attitudes and behavior. Here, we do not www.geneplanet.com. Image is not included in the creative commons provide a systematic analysis of all or many DTC GT licence for the article and printed under the condition of fair use [94] which would exceed the purpose of this more argumen- tative article. However, following a case study approach [66, 67], we present an example analysis of snippets of to the content of the website, even though pre-test three DTC GT companies’ websites to illustrate how counselling is not part of the offer. both the textual and visual components can be analyzed An example for the use of the concept of ‘empower- and thereby underpin our arguments regarding the com- ment’ is provided in Fig. 2. Written in capital letters, the municative complexity and the resulting ethical rele- website suggests “YOUR HEALTH CHECK IS INCOM- vance. For this purpose we have selected three different PLETE! TAKE THE GENETIC PROFILE TEST. TAKE companies from the US, Europe and Asia to reflect the CONTROL!” and in smaller font: “Know your genetic phenomenon on an international level. We take the ex- risk for heart disease, hypertension, diabetes and obesity ample websites and snippets as illustrative cases to dem- and protect against these conditions before its (sic!) on- onstrate different key issues. set.”, while the background image of a magnifying glass enhancing the view on a DNA strand symbolically sig- Results nals that, somehow, important information in the DNA Overall, we would like to highlight three main critical has been overlooked that can now be accessed to areas: (1) the use of material suggesting medical profes- complete the health check. Apart from the intimidating sional legitimacy as a trust-establishing tool, (2) the sug- message, the text clearly suggests that by undergoing the gestion of empowerment as a benefit of using DTC GT genetic test, consumers can make up for a lacking health services and (3) the narrative of responsibility as a per- check themselves (social meaning of empowerment) and suasive appeal to moral self-conception. take control as well as take preventive measures against For an example of the first aspect see Fig. 1. The use the diseases mentioned once they know their genetic of such material may be misleading in that it suggests involvement of a physician in the process even though, as is the case in this company, the marketing is directed at the consumer and the information of the website does not state that a physician is required to order sample kits or to access the test results online. It may be argued that the image used here is a mere illustration of a situ- ation where a client talks to his/her doctor about his/her health. The contextual use, however, lets the website benefit from the display of a physician in a face-to-face counselling situation. In this situation a woman seen Fig. 2 Intimidating message and visual appeal to curiosity and a wish to take action. http://www.xcode.in. Image is not included in from behind serves as a placeholder for the recipient the creative commons licence for the article and printed under the allowing immersion into the depicted situation. The condition of fair use [95] image thus evokes trust and sympathy which are linked Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 7 of 11 risk for them (control meaning of empowerment). At community, the importance of close social relationships the same time, the image appeals to a sense of curiosity and the rewards of parenthood, the message calls to a and lust for power, a wish to look into detail and become feeling of responsibility towards others. The selling point an investigator taking action in uncovering a mystery or here is that by using the service a contribution is made looking for traces in a criminal case – someone who is to the well-being of close others. indeed in control. However, undergoing genetic testing is neither a necessary condition to take preventive mea- Discussion sures against these particular diseases, nor does know- The use of imagery of the type from the first example ledge of the risk of getting them equal an increase in works as a trust-building device relying on the power of control. It remains a fact, however, that the information the image of the medical profession. This use of images can be accessed without consultation of a medical pro- has also been detected in Borry, Shabani & Howard’s fessional. Read in this manner, the idea of empowerment work [75]. According to their analysis, DTC GT websites is correct, read in the other, it is rather shallow, yet the share analogies to advertising of pharmaceuticals. They line between the two is blurred. argue for the suggestive power of nonpropositional con- A third aspect is responsibilization, i.e. a shift in as- tent that can also be identified for commercial genetic cribed responsibility: In 2013, the FDA banned the US testing, observing the use of images of doctors in some website of 23andme from offering genetic testing for DTC GT websites even in cases where the marketing predisposition to Alzheimer’s Disease (AD), among other model of the provider does not include involvement of a diseases [68]. However, according to information on the physician. However, only an analysis of the images used website that service is still available outside the US [69]. can reveal the manner in which they achieve their effect. Although there is increasing critique of giving people ac- The second critical aspect resulting from the use of cess to this particular information, many people say that persuasive communication methods in DTC GT is the despite their fear of AD they would rather know their utilization of the concept of ‘empowerment’. The mean- risk than remain in the dark about the danger [70]. For ing of empowerment is indeed twofold: Empowerment some, knowing their APOE status and AD risk may en- entails the ability of individuals or groups to take control courage them to engage in activities to fend off the dis- of their circumstances and exercise power [76], which, ease [71] or may prompt them to participate in clinical in this case, may be achieved by accessing information research that could lead to more information about the without consulting a medical professional and thus being causes and possible cures for AD [72]. The latter state- less dependent on an expert. The gate-keeping function ment, in particular, must be understood in the context of medical professionals is undermined and the individ- of overall preventive action and risk planning underlying ual is put in a situation where he/she is not just treated the rhetoric of 23andme “Take a more active role in but also is able to negotiate. In this sense, empowerment managing your health. Knowing how your genes may means gaining new opportunities for action that were impact your health can help you to plan for the future not available before. It represents a shift in power rela- and personalize your healthcare with your doctor” [73]. tions in a social context. Understood in this narrow A message is mobilized here that appeals to a feeling of sense, the notion of empowerment is correct, whether responsibility for personal health that goes beyond em- the acquired information is helpful or not. This refers to powerment in a wide sense, as it implies that until now a social meaning of empowerment. one has been stuck in a passive role, doing nothing, and now action becomes necessary [74]. Another example is provided in Fig. 3: An animated graphic displaying fictional cut scenes from key mo- ments of a happy life (a child taking its very first steps with the help of its parents, a woman playing with a dog outside, people celebrating at a family gathering) builds the background for yet another persuasive appeal: “DNA screening for the important moments in life. We help you make smart choices about your health, your family and your future”. Apart from possibly relating to the moral notion of good life here, this message mobilizes a rhetoric of responsible choices and introduces the Fig. 3 Use of visual material in DTC GT as an appeal to feelings of responsibility. http://www.counsyl.com. Image is not included in the thought of “smart” decisions affecting not only one’s creative commons licence for the article and printed under the own personal health but also one’s family’s. By embed- condition of fair use [96] ding this message in images transporting a sense of Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 8 of 11 There is, however, an additional notion attached to the particular attitudes and show behavior in favor of the term: it covers an alleged increase of control exceeding DTC GT companies’ economic success. Thus, while gen- access to information and overcoming the dependency etic counselling per definition does not operate with per- of medical experts, because it may also imply control suasive communication methods but ideally aims at an over the individual future based on better (health) deci- open-ended, non-directive process, this claim is not in- sions in the present. In this sense, empowerment refers herently respected in DTC GT commercial practices. not only to a power shift in doctor-patient/consumer re- The communication aims are in the former lationships but to the increase in the capacity to control medical-consultant while in the latter profit-oriented by and create one’s own future health and fate. This notion nature. The DTC GT companies’ communication is thus is an implicit claim not backed by scientific evidence but ethically problematic when we take into consideration it clearly has a positive persuasive connotation serving that genetic testing may be a source of harm and may marketing goals, blurring the line between the two also affect third persons. meanings of the term. Our observation here is in line We consider two counter-arguments one can raise with research by Liu and Pearson [77] and Covolo et al. against this statement. 1. People are used to being con- [78] who observe the use of empowerment in DTC GT fronted with influencing messages, so there is nothing to as a strong emotionally laden selling point. However, the worry about. Even though the first part of this statement visual means enhancing those emotional appeals were is factually correct, it would not affect the validity of only touched upon slightly in their research. criticism of the use of persuasive means. On top of that, The phenomenon could also be described in terms this argument is a good example of an is-ought problem: of the concept of personal utility: In the second ex- just because it is the case that people are constantly con- ample (Fig. 2)weobserve,thatthe promiseofa fronted with persuasive appeals as consumers this does health benefit exist on a textual level, and the appeal not mean that this should be the case or that it is not to curiosity and a wish for control are integrated on ethically problematic. 2. As Rothschild [85] suggests, a pictorial level. The latter corresponds to a merely marketing of public health issues in order to get people to perceived, personal utility not necessarily based on adopt certain behaviors or attitudes may be more effect- clinical utility [79]. ive for public health than education or even the coercive The appeal to responsibility corresponds with the in- force of law, and may be therefore ethically justified. creasing awareness of aging and the willingness of taking However, this is only true if the aim of getting as many responsibility for life years gained [80]. Such responsibil- people as possible to undergo predictive genetic testing ity is sometimes embedded in a naive lay interpretation can be clearly, uncontroversially identified as good in it- of genetics, namely to rely on genetic determinism even self. This is, however, not the case as the ongoing con- for common complex diseases. This wish for planning troversies concerning the clinical and personal utility later life is – according to our hypothesis – motivated by show, whether for medical or personal purposes. Even if moral underpinnings of responsibility towards one’s fam- it were, the means by which this end is achieved remain ily and oneself, and to a lesser part towards the society. ethically problematic which affects the quality of that The narrative of active roles as well as the images of end. Research on the use and effects of DTC GT on family life and parental care draw our attention towards health behavior has, thus far, not provided clear evidence a new approach, critically discussed as responsibilization of health benefits or significant positive changes in [81, 82]. Such responsibilization is, however, problematic health behavior [18, 86, 87]. Contrarily, we have to con- if the causalities remain vague or unproven or if the sider risk compensation as a potential side effect of hav- process ends in a social practice of blaming and loss of ing personal risk information providing a feeling of solidarity [83]. At least for societies with a publically fi- safety, leading to deterioration instead of improvement nanced healthcare system, this tackles a cultural devel- of health behavior [88]. opment corresponding to individualization and self-optimization [84] that needs to be discussed and Conclusions critically reviewed in future work. As we have argued above, DTC GT websites as market- The use of such arational persuasive appeals designed ing and advertising platforms contain persuasive mes- to convince consumers to undergo a genetic test would sages and arational appeals that pose ethical problems. not be ethically acceptable in face-to-face genetic coun- Apart from the ethical tension between solidarity- or selling. This gap reflects the ethical divide between med- market-oriented health care as such, our analysis points ical ethics and market principles. While the patient’s at a more fundamental problem. The question is how autonomy is paramount in clinical genetic testing, it be- the public and patients can be empowered to detect and comes a means to an end in commercial genetic testing reflect the complex, persuasive forms of communication communication to persuade consumers to develop that is taking place increasingly in a digitalized market. Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 9 of 11 Persuasive appeals operate on a spectrum [50] and thus have seized selling tests directly to consumers and in- pose an ambiguous way of influence in regard to auton- volve doctors as gatekeepers instead, there may be a shift omy as they tend to bypass the individual’s capacity to in the ways they address consumers and advertise their rationally reason and make decisions based on facts. services, posing an interesting field of future empirical This, however, seems inappropriate, given the critical na- research. ture of genetic risk information and its possible impacts that warrant a careful weighing of options. As we have Endnotes shown, at least some companies rely in their advertising Similar concerns are being discussed in the debate on an appearance of medical legitimacy to gain con- about nudging. While parallels are worth mentioning, sumers’ trust, thus utilizing the trustworthy “image” of the nudging debate revolves around the question medicine and doctors for commercial purposes. While whether it is permissible for the state to nudge citizens there is no clear evidence that DTC GT leads to actual for their own good [43]. harm in consumers, it remains problematic to address Arationality refers here to means that do not influ- them in a way that is meant to influence their ence reasoning by using rational arguments but by evok- decision-making. The fact that the issue of harm has ing emotions or appealing to cognitive heuristics / been investigated repeatedly [18] shows that there is stereotypes. This does not mean, however, that this type some agreement among scholars that there is at least a of influence does not follow certain principles or that risk for harm. We believe this risk should be clearly the way it works does not have its own rationale. communicated and not distracted from. Arational means are means that are meant to bypass the The modes and contents of the advertising messages reasoning process by making someone feel in a certain should therefore be considered in ethical assessments of way instead of giving them something to think about. DTC advertising of genetic testing. We suggest that the For a detailed discussion see Sawicki 2013 [49]. actual implications of genetic testing for consumers Abbreviations should be in line with the values and ideas the advertis- AD: Alzheimer’s disease; APOE: Apolipoprotein E; DNA: Deoxyribonucleic acid; ing appeals to, apart from the question whether harm is DTC GT: Direct-to-consumer genetic testing; EU: European Union; FDA: Federal Food and Drug Administration; GT: Genetic testing; US: United involved or not. We have further compared the commer- States cial modes and methods of communication with the standards in place for medical genetic counselling and Acknowledgements discussed examples of DTC GT website communication The authors would like to thank the staff of the Center for Research Ethics and Bioethics at Uppsala University for helpful commenting on an earlier that reflect these problems. version of the manuscript, Sabine Wöhlke for constructive commenting on We do recognize that there is a variety of reasons why the final version and Julia Perry for language editing. consumers purchase genetic tests and that they may Funding have personal utilities and different values for them that This work was partly supported by the Swedish Riksbankens Jubileumsfond go beyond clinical utility [89]. Nonetheless, the literature (grant no.: 1351730) 2015–2019. on user motivations also shows that improving health is Authors’ contributions among the most important factors [17, 90–92], and MS: Conceptual work, analysis and writing; SS: Analysis and writing. Both there are also studies that have shown that advertising authors read and approved the final version of the manuscript. contents correspond to this motive [93]. Our findings do not allow for a full proposal of recom- Ethics approval and consent to participate Not applicable. mendations for policy changes in the regulation of DTC advertising of genetic testing, yet we suggest that multi- Competing interests modal analysis of communication content should be The authors declare that they have no competing interests. considered in ethical examinations of such advertising to gain an in-depth understanding of the explicit and hid- Publisher’sNote Springer Nature remains neutral with regard to jurisdictional claims in den messages of such communication which are both published maps and institutional affiliations. ethically relevant. To gain better understanding of the persuasive appeals in DTC GT, it is necessary to develop Received: 3 February 2017 Accepted: 16 May 2018 a methodological approach that allows us to pay more attention to the details and also visual components to References reveal the moral and scientific messages in detail. Add- 1. 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Medicine, market and communication: ethical considerations in regard to persuasive communication in direct-to-consumer genetic testing services

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Abstract

Background: Commercial genetic testing offered over the internet, known as direct-to-consumer genetic testing (DTC GT), currently is under ethical attack. A common critique aims at the limited validation of the tests as well as the risk of psycho-social stress or adaption of incorrect behavior by users triggered by misleading health information. Here, we examine in detail the specific role of advertising communication of DTC GT companies from a medical ethical perspective. Our argumentative analysis departs from the starting point that DTC GT operates at the intersection of two different contexts: medicine on the one hand and the market on the other. Both fields differ strongly with regard to their standards of communication practices and the underlying normative assumptions regarding autonomy and responsibility. Methods: Following a short review of the ethical contexts of medical and commercial communication, we provide case examples for persuasive messages of DTC GT websites and briefly analyze their design with a multi-modal approach to illustrate some of their problematic implications. Results: We observe three main aspects in DTC GT advertising communication: (1) the use of material suggesting medical professional legitimacy as a trust-establishing tool, (2) the suggestion of empowerment as a benefit of using DTC GT services and (3) the narrative of responsibility as a persuasive appeal to a moral self-conception. Conclusions: While strengthening and respecting the autonomy of a patient is the focus in medical communication, specifically genetic counselling, persuasive communication is the normal mode in marketing of consumer goods, presuming an autonomous, rational, independent consumer. This creates tension in the context of DTC GT regarding the expectation and normative assessment of communication strategies. Our analysis can even the ground for a better understanding of ethical problems associated with intersections of medical and commercial communication and point to perspectives of analysis of DTC GT advertising. Keywords: Direct-to-consumer genetic testing, Communication ethics, Advertising, Genetic Counselling, Persuasive communication * Correspondence: manuel.schaper@medizin.uni-goettingen.de Department of Medical Ethics and History of Medicine, University Medical Center Göttingen, Humboldtallee 36, 37073 Göttingen, Germany © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 2 of 11 Background Regarding the communication practices of DTC GT “DNA screening for the important moments in life” [1], providers, a systematic review by Covolo et al. [18] con- “Unwrap you. Celebrate your holiday with the gift of cluded that companies emphasize positive aspects of knowledge” [2]. These are only two of the latest examples their service in terms of individual empowerment, while of promising slogans to be found on websites of DTC GT dangers and disadvantages (genetic discrimination, emo- companies. They suggest genetic information as a special tional burdens) are widely neglected. Most of the 16 present and DNA screening as a means of achieving a bet- studies of the review dealing with DTC GT websites and ter life. Commercially offered genetic tests, so-called their content were based on content analysis and quality direct-to-consumer genetic test (DTC GT), pose a grow- checks of websites on the provided genetic counselling ing and dynamic market in countries with permissive le- procedures and the descriptions of risks, benefits and gislation concerning genetic testing [3]. Faster and much limitations of genetic tests. Marketing strategies, they cheaper technology, such as high throughput sequencing conclude, overemphasize the positive aspects of the and growing databanks of hereditary markers, now make product and the role of genes as a cause of disease. The it technically possible for more and more companies to authors further conclude that it would be important for offer and advertise tests for a variety of purposes. These future policy making to better understand the communi- tests range from testing for predisposition to common cative strategies “that explain how communication can complex diseases, diagnostics of genetic traits for food in- be used to manipulate the beliefs and attitudes of con- tolerances and testing for carrier status of rare genetic dis- sumers”. However, the studies reviewed mainly focused eases to paternity and ancestry tests. The business of DTC narrowly on the writing/language-based procedure of in- GT is typically based on marketing via the companies’ formation transmission (e.g. [19]). Therefore, they con- websites, where consumers find information and can clude that this communication process could be order test kits to submit a saliva sample for analysis. Test optimized with more comprehensive, more accurate, results are then accessible in a password-secured section more balanced and generally more information to coun- of the website. Since the website is the main source of in- ter these deficiencies. Thus, deficits of information in formation and the virtual location for ordering a test kit terms of quality, content and comprehensiveness seem and accessing results, we will, in our following analysis, to be regarded as a main problem and a leading rationale focus on this medium. However, main lines of our argu- of criticism. Following this line of argumentation, some mentation may also apply to traditional forms of advertis- studies now suggest to vary presentation modes to improve ing for DTC GT. the understanding and perception of risks [11, 20, 21]. The The current controversy surrounding DTC GT mainly improvement of communication is here seen in a change focuses on health-related tests in a narrow sense, i.e. of presentation modes of content, presupposing content is tests for genetic disorders, risk prediction for common accurate and comprehensive. Shaer et al., for example sug- complex disease and carrier status [4]. Ancestry or food gest that genetic risk reports should be presented in the allergy tests have gained less attention [5]. The spectrum form of “interactive bubble charts”, a special visual display of concerns includes individual possible psychological mode that accounts for different items simultaneously [21]. harm [6], lack of professional counselling [7], lacking While such efforts are generally desirable, they do not ac- data protection and opaque data protection policies [8] count for problems that may arise from the content itself. and lacking validity and clinical utility of test results [9, For example, it is not helpful if content is better under- 10]. For example, doubts were raised about the validity stood when the content is actually inaccurate or in some of tests making risk predictions based on single nucleo- way misleading. In summary, the current debate tends to tide polymorphisms (SNPs). Also it has been problema- focus on what is perceived as lacking in DTC GT compan- tized that different companies provide different risk ies’ communication and policy. To our understanding it estimates for individuals based on the same methods hasn’t yet focused on the ethical implications of the persua- [11, 12]. Some recent empirical studies have shown that sive appeals in DTC GT companies’ communication, exist- risk information obtained via DTC GT has little influ- ing apart from questions around validity and utility of test ence on changes in health-related behavior [11, 13, 14]. results. This also includes the aspect of indirect / imper- Such findings bolster worries about over-interpretation sonal one-way online communication. of health risk information but also lessen the hopes In this article, we will therefore highlight a frequently associated with preventive measures or life style changes. addressed aspect that has not been fully explored in re- Furthermore, there is a worry that lay persons cent criticism of DTC GT, namely the role of advertising misinterpret the provided information [15, 16]. In sum, (i.e. persuasive communication efforts including images) more research is necessary to elucidate how the results of companies who operate in this field, from an ethical of DTC GT are perceived by users and what effects they perspective. Our leading research question is: what are have on them [17]. main ethical aspects of communicative means and Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 3 of 11 messages of DTC GT companies? We start by problem- assumptions [27]. Today, communication is seen as atizing the use of such means in the field of commercial- core part of professional conduct in the area of medi- ized medical practice as such by referring to a normative cine: from the ancient ideal of doctor-patient confi- standpoint of medical ethics. In doing so, we want to dentiality to the modern concept of informed consent broaden the ethical perspective for analyzing the general and counselling procedures, medical professional effects of such commercialization in genetics and medi- norms and ethical standards value comprehensive, cine. Furthermore, we provide an example analysis of trustful and objective communication as a cornerstone morally problematic messages induced by commercial of a good doctor-patient relationship [25]. advertisements of such tests by analyzing website mes- Concerning the modern principles of medical ethics, sages of DTC GT. Finally, we will conclude that simple communication serves the purpose of supporting the approaches of content analysis or quality checks of DTC affected person’s autonomous decision-making. Thus, GT websites fall short in capturing the specific quality of it is supposed to cover all relevant information, espe- the medium and the persuasive appeals of advertising cially about meaning, nature and consequences of the content, and that ethical analysis of DTC GT should be procedures. In the case of genetic counselling, add- sensitive to those means of persuasion and their implica- itional requirements are in place, since genetic infor- tions. In the following, we examine how the form of mation, especially risk information, can have severe communication related to DTC GT poses fundamental consequences for an individual in terms of personal ethical challenges because of its online and commercial well-being and life-planning. Here, the additional character. We want to critically revise the idea that pro- claim is made that a realistic picture of chances, risks viding more comprehensive and balanced information is and utility of genetic testing and its results should be the solution to all ethical problems of DTC GT regard- drawn [28, 29]. Generally speaking, the communica- ing its communication and information aspects, as the tion in this context should provide comprehensive problems go beyond these issues. We start with a reflec- and truthful information in order to put patients or tion on economization and commercialization in the research participants in a position where they can health care context, and subsequently on how these phe- make a well-informed decision (legally defined as in- nomena affect communication practice. formed consent) based on the knowledge of possible consequences of their decision. Further, the aspect of Normative frameworks of communication in medicine non-directiveness is crucial to genetic counselling and market contexts which may be historically explained as a compensa- In the following, we want to introduce an analytical dis- tion reaction to abusive practices in human genetics. tinction of communication principles as defined for It has been suggested that it reflects a wish of med- medicine/health care and for the market. In practice, of ical professionals to distance themselves from their course, there is and always has been a tremendous over- clients’ decisions, especially when it comes to delicate lap: in many health care systems of the world, medical cases of reproductive decision-making [30, 31], and care is not free of market principles [22]. However, that there is also an economic risk for individual doc- health economists as well as ethicists have pointed out tors or medical institutions, when they are held re- that there is some tension between the market and sponsible for certain consequences of decisions they healthcare [23, 24] as they ideally mark two poles on the advised [32]. Non-directiveness thus means that pro- practical spectrum. Our focus is mainly on the role of fessionals do not provide personal opinions or advice communication in both areas and how there are ethic- for decision-making as it might be common and ex- ally relevant consequences when the market and medi- pected by patients in many other areas of health care. cine overlap. The appropriateness and factual application of a Within medicine, communication serves patient in- non-directive approach in genetic counselling is none- formation. Furthermore, communication can be seen theless a matter of debate and a shared as a trust-building mechanism for a good decision-making model may be more suitable. How- doctor-patient relationship [25]. In current concepts ever, the aim of genetic counselling, even though op- of shared decision-making it is the crucial means to erating with attempts to influence clients in certain ensure that facts and values are exchanged and a de- situations, would remain in line with their best inter- cision is based on a joint agreement [26]. Overall, est [33]. Particularly, it is this latter aspect of commu- communication can be understood as the main condi- nication that deserves special attention when it comes tion to transform a traditional, paternalistic form of to DTC GT. Some empirical studies have shown that professional ethics in which the professional reasons non-directiveness is not necessarily a reality in actual and decides on his/her own into a modern version of counselling practice [34] yet it persists as moral ideal a relationship based on contractualistic or deliberative that is still paradigmatic in many respective guidelines Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 4 of 11 and recommendations like the UN declaration on hu- communication directed at influencing behavior of the man genetic data, the code of ethics of the National targeted individuals, however, is not touched by such ef- Society of Genetic Counselors in the US or the forts. This significantly differs from the ethical frame- Guidelines of the German Society for Human Genet- work in medicine where communication directed at ics (GfH) [28, 35, 36]. Even though this ideal may patients should comply to the principle of respect for change with the changing role of genetics in medicine autonomy [42]. Consequently, advertising as a form of [37]it is important to recognizethatit is absentin communication in medicine immediately becomes DTC GT and that in a commercial context there is a ethically problematic, as individuals should not be clear directive interest. Another important reason why manipulated in their decision-making. We therefore commercial genetic testing deserves special attention assume that the market and medicine are seen as is the exceptional nature of genetic data: first, genetic contrary parts on the spectrum of provision of meci- risk information is probabilistic in nature and in- cal goods. This assumption is further supported by cludes a strong element of uncertainty. The status of the fact that all countries except for the US and such data, in terms of clinical utility, is thus not New Zealand have banned advertising of prescription clear; second, genetic information is not only individ- drugs and medical devices [44]. In the case of the ual information, as it refers to the genetic make-up US we may assume it to be an expression of a cul- also shared by relatives who may be subject to the ef- tural orientation towards individual self-responsibility fects of “knowing” their DNA as well. (not only) for health and a strong tradition of a lib- On the other hand, communication in the market eral economy. sphere is characterized by a less distinct ethical frame- Normative frameworks codifying communication work. However, there are laws and regulations directly therefore exist in both fields. To sum it up, the medical or indirectly serving consumer protection in the EU and profession should communicate on the basis of its com- the US. In the US, DTC genetic tests may be freely ad- mitment to the autonomy and beneficence of patients vertised if approved by the Federal Food and Drug Ad- [45, 46]. Since genetic risk information can have a severe ministration (FDA) [38]. Apart from varying national psychological impact on at-risk individuals the principle regulations, a EU-wide regulation is currently underway. of non-maleficence has turned out to be relevant for the The initial draft intended to ban DTC advertising of communication processes of genetic counselling as well genetic tests but the final version includes restrictions [26]. Our argument points therefore at the tension be- on advertising of genetic tests such as a prohibition of tween persuasive efforts in advertising as common in false claims about the product’s properties and withhold- market communication and the medico-ethical commu- ing associated risks [39]. nication ideals. Also, the advertising industry itself has established few ethical guidelines. Lying and cheating is regarded as morally unacceptable and in many circumstances also le- Persuasive communication in direct-to-consumer gally problematic. However, advertisement and the pres- advertising entation of imbalanced information is regarded as a What are the implications when genetic tests are of- constitutional part of market communication. Standards fered as a consumer’s good on the free market and do exist that require companies to provide truthful prod- yet are not or only marginally embedded in the uct information in their advertising as well as in the la- current medical ethical framework? A special focus beling of their products [40]. There is, however, no should be given to the advertisement character and direct equivalent to the principles of biomedical ethics its ethical implications. As explained above, the main in commercial communication. Instead, voluntary initia- principles of the market require that products and tives of the advertising industry such as the Advertising services are advertised for the sake of increasing sales Self-Regulatory Council in the US or the German numbers and thus serve the main interest of the Advertising Standards Council (Deutscher Werberat) are salesperson. Commercial websites hint at products or in place. These voluntary commitments of the economy services but also present an interactive platform for provide guidelines and serve as a means of communication and financial transactions that repre- self-regulation. Yet (at least in Germany) together with sents their company. It is therefore important to have laws regulating competition and the competing market a closer look at their content and structure: following players, they form a regulatory structure with a form of common design principles of commercial websites, inherent ethics that is maintained by different stake- the key product is usually advertised as the central holder groups [41]. Thus, commitments of the industry content on the main page and the purchase interface as well as legal restrictions set limits to what is allowed is just one click away. Supplementary content such as in advertising. The nature of advertising as a type of navigation links allow users to navigate to other Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 5 of 11 subpages of the website with additional content and the opposite. The term “implicitly propositional content” features. may therefore be more suitable to capture the actual Among various definitions of advertising, one can meaning of it, maintaining the notion of suggestive derive a common understanding that it is intentional character. communication aimed at behavior changes of the re- The use of subtle persuasion techniques, according cipients, for the purpose of distributing a product. to Biegler, undermines patient autonomy and raises Based on insights from the field of psychology, the doubt whether such advertisement should be re- behavioral changes are achieved by changing attitudes stricted. Here lies an important distinction from the or self-images of the consumers and creating desires concept of nudging. In the medical field, nudging re- [47, 48]. We call this its persuasive character, which fers to attempts to drive choice in a beneficial direc- is based in the utilization of rational and/or arational tion while preserving autonomy, qualifying this action means [49–51]. as a form of libertarian paternalism, an action for the The idea of products and services being advertised own good of the patient [58]. by providers that compete for consumer attention is a From an ethical point of view, it is especially prob- givenfactin modernwestern societies. Advertising is lematicthattosomedegree, theinduction of false not only a significant sector of business activities but beliefs may be intended by commercial providers. The also an area of extensive research in various disci- occasional and sometimes willful induction of false plines and an important cultural phenomenon of beliefs can be described as a manipulative action that modern societies [48, 50]. However, this type of com- potentially infringes on the autonomy of recipients. munication raises general concerns with regard to its Their own ability to reason and judge independently legitimacy and ethical implications [50, 52–54]. Dis- is being compromised since they do not necessarily cussions revolve around the relationship between ends become aware of how their attitudes and, conse- and means of communication, assuming that the quently, their decision-making are influenced in subtle means used to achieve certain ends affect the quality ways [50, 51, 59]. Thus, it may be expected that ad- and nature of those ends [54]. vertising uses all means legally available in order to Advertising operates with a set of seductive qualities achieve the desired effect, even though ethical permissibil- and uses techniques from social psychology like priming ity remains questionable, at least in those cases where ad- and evaluative conditioning, methods of influencing atti- vertising makes use of emotional appeals not in line with tudes and opinions. Biegler [55, 56] provides an example the recipients’ original needs [50]. that shows the use of such techniques in marketing of When we transfer these general considerations to the medical products and how they produce false or inaccur- context of DTC GT we can conclude that websites of ate beliefs. The pairing of information with positive im- DTC GT companies do not provide neutral technical in- ages, for example, lead participants in a study to believe formation but contain many messages that classify as ad- that a drug is “safer, more effective, and more beneficial”, vertisement [60]. Websites as a medium are particularly a belief which did not occur in the control group. In an- of interest here, as they not only consist of the presenta- other study, Biegler & Vargas examined the effect of im- tion of text but especially of their visual makeup. This ages in DTC advertisement for prescription drugs. They multi-modality adds to the complexity of media mes- state that images can be seen as arational, emotional or sages and requires appropriate methodologies as held, even manipulative means, concluding that the used im- for example, by a social semiotics approach and modern agery caused viewers to hold beliefs that are explicitly cultural studies [61–63] which we also used for our brief denied in the very same commercial. They identify a bias case study (see below). Our analysis, therefore, goes be- in US legislation regarding pharmaceuticals toward yond a simplistic content analysis of texts. “propositional content”, meaning concrete presentations It is noteworthy here that another aspect of DTC GT of facts about a product. In contrast, “nonpropositional websites is ethically relevant which is related to the content”, consistent of images, audio and other content, medium itself. The communication and handling of in- is being disregarded even though it is an important part formation is different in interaction with a commercial of the message. They propose to further examine the website than it is in a genetic counselling process. The medial quality of advertisement to be able to assess its face-to-face communication in genetic counselling re- ethical dimension: “more research and debate are needed quires a certain amount of time, effort and attention to determine the permissibility of this and other forms of which ensures, at least to some extent, mutual under- nonpropositional persuasion” [57]. The term ‘nonpropo- standing and a careful decision-making process. The sitional content’ seems problematic to the extent to counselor can adapt to the clients’ needs and questions which it literally dismisses the idea that images contain appropriately and the character of the procedure is ser- messages, while the conceptional use of the term claims ious. The online purchase requires no such efforts and Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 6 of 11 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 vir- tual 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 spe- cial qualities and potential implications of such proce- dures (cf [65]). Methods As we have argued above, DTC GT websites can be understood as a form of advertising that is likely to be using persuasive communication techniques including visual material to influence consumer perceptions and, Fig. 1 Use of imagery of medical professionals. http:// in consequence, attitudes and behavior. Here, we do not www.geneplanet.com. Image is not included in the creative commons provide a systematic analysis of all or many DTC GT licence for the article and printed under the condition of fair use [94] which would exceed the purpose of this more argumen- tative article. However, following a case study approach [66, 67], we present an example analysis of snippets of to the content of the website, even though pre-test three DTC GT companies’ websites to illustrate how counselling is not part of the offer. both the textual and visual components can be analyzed An example for the use of the concept of ‘empower- and thereby underpin our arguments regarding the com- ment’ is provided in Fig. 2. Written in capital letters, the municative complexity and the resulting ethical rele- website suggests “YOUR HEALTH CHECK IS INCOM- vance. For this purpose we have selected three different PLETE! TAKE THE GENETIC PROFILE TEST. TAKE companies from the US, Europe and Asia to reflect the CONTROL!” and in smaller font: “Know your genetic phenomenon on an international level. We take the ex- risk for heart disease, hypertension, diabetes and obesity ample websites and snippets as illustrative cases to dem- and protect against these conditions before its (sic!) on- onstrate different key issues. set.”, while the background image of a magnifying glass enhancing the view on a DNA strand symbolically sig- Results nals that, somehow, important information in the DNA Overall, we would like to highlight three main critical has been overlooked that can now be accessed to areas: (1) the use of material suggesting medical profes- complete the health check. Apart from the intimidating sional legitimacy as a trust-establishing tool, (2) the sug- message, the text clearly suggests that by undergoing the gestion of empowerment as a benefit of using DTC GT genetic test, consumers can make up for a lacking health services and (3) the narrative of responsibility as a per- check themselves (social meaning of empowerment) and suasive appeal to moral self-conception. take control as well as take preventive measures against For an example of the first aspect see Fig. 1. The use the diseases mentioned once they know their genetic of such material may be misleading in that it suggests involvement of a physician in the process even though, as is the case in this company, the marketing is directed at the consumer and the information of the website does not state that a physician is required to order sample kits or to access the test results online. It may be argued that the image used here is a mere illustration of a situ- ation where a client talks to his/her doctor about his/her health. The contextual use, however, lets the website benefit from the display of a physician in a face-to-face counselling situation. In this situation a woman seen Fig. 2 Intimidating message and visual appeal to curiosity and a wish to take action. http://www.xcode.in. Image is not included in from behind serves as a placeholder for the recipient the creative commons licence for the article and printed under the allowing immersion into the depicted situation. The condition of fair use [95] image thus evokes trust and sympathy which are linked Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 7 of 11 risk for them (control meaning of empowerment). At community, the importance of close social relationships the same time, the image appeals to a sense of curiosity and the rewards of parenthood, the message calls to a and lust for power, a wish to look into detail and become feeling of responsibility towards others. The selling point an investigator taking action in uncovering a mystery or here is that by using the service a contribution is made looking for traces in a criminal case – someone who is to the well-being of close others. indeed in control. However, undergoing genetic testing is neither a necessary condition to take preventive mea- Discussion sures against these particular diseases, nor does know- The use of imagery of the type from the first example ledge of the risk of getting them equal an increase in works as a trust-building device relying on the power of control. It remains a fact, however, that the information the image of the medical profession. This use of images can be accessed without consultation of a medical pro- has also been detected in Borry, Shabani & Howard’s fessional. Read in this manner, the idea of empowerment work [75]. According to their analysis, DTC GT websites is correct, read in the other, it is rather shallow, yet the share analogies to advertising of pharmaceuticals. They line between the two is blurred. argue for the suggestive power of nonpropositional con- A third aspect is responsibilization, i.e. a shift in as- tent that can also be identified for commercial genetic cribed responsibility: In 2013, the FDA banned the US testing, observing the use of images of doctors in some website of 23andme from offering genetic testing for DTC GT websites even in cases where the marketing predisposition to Alzheimer’s Disease (AD), among other model of the provider does not include involvement of a diseases [68]. However, according to information on the physician. However, only an analysis of the images used website that service is still available outside the US [69]. can reveal the manner in which they achieve their effect. Although there is increasing critique of giving people ac- The second critical aspect resulting from the use of cess to this particular information, many people say that persuasive communication methods in DTC GT is the despite their fear of AD they would rather know their utilization of the concept of ‘empowerment’. The mean- risk than remain in the dark about the danger [70]. For ing of empowerment is indeed twofold: Empowerment some, knowing their APOE status and AD risk may en- entails the ability of individuals or groups to take control courage them to engage in activities to fend off the dis- of their circumstances and exercise power [76], which, ease [71] or may prompt them to participate in clinical in this case, may be achieved by accessing information research that could lead to more information about the without consulting a medical professional and thus being causes and possible cures for AD [72]. The latter state- less dependent on an expert. The gate-keeping function ment, in particular, must be understood in the context of medical professionals is undermined and the individ- of overall preventive action and risk planning underlying ual is put in a situation where he/she is not just treated the rhetoric of 23andme “Take a more active role in but also is able to negotiate. In this sense, empowerment managing your health. Knowing how your genes may means gaining new opportunities for action that were impact your health can help you to plan for the future not available before. It represents a shift in power rela- and personalize your healthcare with your doctor” [73]. tions in a social context. Understood in this narrow A message is mobilized here that appeals to a feeling of sense, the notion of empowerment is correct, whether responsibility for personal health that goes beyond em- the acquired information is helpful or not. This refers to powerment in a wide sense, as it implies that until now a social meaning of empowerment. one has been stuck in a passive role, doing nothing, and now action becomes necessary [74]. Another example is provided in Fig. 3: An animated graphic displaying fictional cut scenes from key mo- ments of a happy life (a child taking its very first steps with the help of its parents, a woman playing with a dog outside, people celebrating at a family gathering) builds the background for yet another persuasive appeal: “DNA screening for the important moments in life. We help you make smart choices about your health, your family and your future”. Apart from possibly relating to the moral notion of good life here, this message mobilizes a rhetoric of responsible choices and introduces the Fig. 3 Use of visual material in DTC GT as an appeal to feelings of responsibility. http://www.counsyl.com. Image is not included in the thought of “smart” decisions affecting not only one’s creative commons licence for the article and printed under the own personal health but also one’s family’s. By embed- condition of fair use [96] ding this message in images transporting a sense of Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 8 of 11 There is, however, an additional notion attached to the particular attitudes and show behavior in favor of the term: it covers an alleged increase of control exceeding DTC GT companies’ economic success. Thus, while gen- access to information and overcoming the dependency etic counselling per definition does not operate with per- of medical experts, because it may also imply control suasive communication methods but ideally aims at an over the individual future based on better (health) deci- open-ended, non-directive process, this claim is not in- sions in the present. In this sense, empowerment refers herently respected in DTC GT commercial practices. not only to a power shift in doctor-patient/consumer re- The communication aims are in the former lationships but to the increase in the capacity to control medical-consultant while in the latter profit-oriented by and create one’s own future health and fate. This notion nature. The DTC GT companies’ communication is thus is an implicit claim not backed by scientific evidence but ethically problematic when we take into consideration it clearly has a positive persuasive connotation serving that genetic testing may be a source of harm and may marketing goals, blurring the line between the two also affect third persons. meanings of the term. Our observation here is in line We consider two counter-arguments one can raise with research by Liu and Pearson [77] and Covolo et al. against this statement. 1. People are used to being con- [78] who observe the use of empowerment in DTC GT fronted with influencing messages, so there is nothing to as a strong emotionally laden selling point. However, the worry about. Even though the first part of this statement visual means enhancing those emotional appeals were is factually correct, it would not affect the validity of only touched upon slightly in their research. criticism of the use of persuasive means. On top of that, The phenomenon could also be described in terms this argument is a good example of an is-ought problem: of the concept of personal utility: In the second ex- just because it is the case that people are constantly con- ample (Fig. 2)weobserve,thatthe promiseofa fronted with persuasive appeals as consumers this does health benefit exist on a textual level, and the appeal not mean that this should be the case or that it is not to curiosity and a wish for control are integrated on ethically problematic. 2. As Rothschild [85] suggests, a pictorial level. The latter corresponds to a merely marketing of public health issues in order to get people to perceived, personal utility not necessarily based on adopt certain behaviors or attitudes may be more effect- clinical utility [79]. ive for public health than education or even the coercive The appeal to responsibility corresponds with the in- force of law, and may be therefore ethically justified. creasing awareness of aging and the willingness of taking However, this is only true if the aim of getting as many responsibility for life years gained [80]. Such responsibil- people as possible to undergo predictive genetic testing ity is sometimes embedded in a naive lay interpretation can be clearly, uncontroversially identified as good in it- of genetics, namely to rely on genetic determinism even self. This is, however, not the case as the ongoing con- for common complex diseases. This wish for planning troversies concerning the clinical and personal utility later life is – according to our hypothesis – motivated by show, whether for medical or personal purposes. Even if moral underpinnings of responsibility towards one’s fam- it were, the means by which this end is achieved remain ily and oneself, and to a lesser part towards the society. ethically problematic which affects the quality of that The narrative of active roles as well as the images of end. Research on the use and effects of DTC GT on family life and parental care draw our attention towards health behavior has, thus far, not provided clear evidence a new approach, critically discussed as responsibilization of health benefits or significant positive changes in [81, 82]. Such responsibilization is, however, problematic health behavior [18, 86, 87]. Contrarily, we have to con- if the causalities remain vague or unproven or if the sider risk compensation as a potential side effect of hav- process ends in a social practice of blaming and loss of ing personal risk information providing a feeling of solidarity [83]. At least for societies with a publically fi- safety, leading to deterioration instead of improvement nanced healthcare system, this tackles a cultural devel- of health behavior [88]. opment corresponding to individualization and self-optimization [84] that needs to be discussed and Conclusions critically reviewed in future work. As we have argued above, DTC GT websites as market- The use of such arational persuasive appeals designed ing and advertising platforms contain persuasive mes- to convince consumers to undergo a genetic test would sages and arational appeals that pose ethical problems. not be ethically acceptable in face-to-face genetic coun- Apart from the ethical tension between solidarity- or selling. This gap reflects the ethical divide between med- market-oriented health care as such, our analysis points ical ethics and market principles. While the patient’s at a more fundamental problem. The question is how autonomy is paramount in clinical genetic testing, it be- the public and patients can be empowered to detect and comes a means to an end in commercial genetic testing reflect the complex, persuasive forms of communication communication to persuade consumers to develop that is taking place increasingly in a digitalized market. Schaper and Schicktanz BMC Medical Ethics (2018) 19:56 Page 9 of 11 Persuasive appeals operate on a spectrum [50] and thus have seized selling tests directly to consumers and in- pose an ambiguous way of influence in regard to auton- volve doctors as gatekeepers instead, there may be a shift omy as they tend to bypass the individual’s capacity to in the ways they address consumers and advertise their rationally reason and make decisions based on facts. services, posing an interesting field of future empirical This, however, seems inappropriate, given the critical na- research. ture of genetic risk information and its possible impacts that warrant a careful weighing of options. As we have Endnotes shown, at least some companies rely in their advertising Similar concerns are being discussed in the debate on an appearance of medical legitimacy to gain con- about nudging. While parallels are worth mentioning, sumers’ trust, thus utilizing the trustworthy “image” of the nudging debate revolves around the question medicine and doctors for commercial purposes. While whether it is permissible for the state to nudge citizens there is no clear evidence that DTC GT leads to actual for their own good [43]. harm in consumers, it remains problematic to address Arationality refers here to means that do not influ- them in a way that is meant to influence their ence reasoning by using rational arguments but by evok- decision-making. The fact that the issue of harm has ing emotions or appealing to cognitive heuristics / been investigated repeatedly [18] shows that there is stereotypes. This does not mean, however, that this type some agreement among scholars that there is at least a of influence does not follow certain principles or that risk for harm. We believe this risk should be clearly the way it works does not have its own rationale. communicated and not distracted from. Arational means are means that are meant to bypass the The modes and contents of the advertising messages reasoning process by making someone feel in a certain should therefore be considered in ethical assessments of way instead of giving them something to think about. DTC advertising of genetic testing. We suggest that the For a detailed discussion see Sawicki 2013 [49]. actual implications of genetic testing for consumers Abbreviations should be in line with the values and ideas the advertis- AD: Alzheimer’s disease; APOE: Apolipoprotein E; DNA: Deoxyribonucleic acid; ing appeals to, apart from the question whether harm is DTC GT: Direct-to-consumer genetic testing; EU: European Union; FDA: Federal Food and Drug Administration; GT: Genetic testing; US: United involved or not. We have further compared the commer- States cial modes and methods of communication with the standards in place for medical genetic counselling and Acknowledgements discussed examples of DTC GT website communication The authors would like to thank the staff of the Center for Research Ethics and Bioethics at Uppsala University for helpful commenting on an earlier that reflect these problems. version of the manuscript, Sabine Wöhlke for constructive commenting on We do recognize that there is a variety of reasons why the final version and Julia Perry for language editing. consumers purchase genetic tests and that they may Funding have personal utilities and different values for them that This work was partly supported by the Swedish Riksbankens Jubileumsfond go beyond clinical utility [89]. Nonetheless, the literature (grant no.: 1351730) 2015–2019. on user motivations also shows that improving health is Authors’ contributions among the most important factors [17, 90–92], and MS: Conceptual work, analysis and writing; SS: Analysis and writing. Both there are also studies that have shown that advertising authors read and approved the final version of the manuscript. contents correspond to this motive [93]. Our findings do not allow for a full proposal of recom- Ethics approval and consent to participate Not applicable. mendations for policy changes in the regulation of DTC advertising of genetic testing, yet we suggest that multi- Competing interests modal analysis of communication content should be The authors declare that they have no competing interests. considered in ethical examinations of such advertising to gain an in-depth understanding of the explicit and hid- Publisher’sNote Springer Nature remains neutral with regard to jurisdictional claims in den messages of such communication which are both published maps and institutional affiliations. ethically relevant. To gain better understanding of the persuasive appeals in DTC GT, it is necessary to develop Received: 3 February 2017 Accepted: 16 May 2018 a methodological approach that allows us to pay more attention to the details and also visual components to References reveal the moral and scientific messages in detail. Add- 1. 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