In this sense, empowerment means gaining new opportunities for action that were not available before. It represents a shift in power relations in a social context. Understood in this narrow sense, the notion of empowerment is correct, whether the acquired information is helpful or not. This refers to a social meaning of empowerment. There is, however, an additional notion attached to the term: it covers an alleged increase of control exceeding access to information and overcoming the dependency of medical experts, because it may also imply control over the individual future based on better health decisions in the present.
This notion is an implicit claim not backed by scientific evidence but it clearly has a positive persuasive connotation serving marketing goals, blurring the line between the two meanings of the term. Our observation here is in line with research by Liu and Pearson [ 77 ] and Covolo et al. However, the visual means enhancing those emotional appeals were only touched upon slightly in their research.
The phenomenon could also be described in terms of the concept of personal utility: In the second example Fig. The latter corresponds to a merely perceived, personal utility not necessarily based on clinical utility [ 79 ]. The appeal to responsibility corresponds with the increasing awareness of aging and the willingness of taking responsibility for life years gained [ 80 ]. Such responsibility is sometimes embedded in a naive lay interpretation of genetics, namely to rely on genetic determinism even for common complex diseases. The narrative of active roles as well as the images of family life and parental care draw our attention towards a new approach, critically discussed as responsibilization [ 81 , 82 ].
Such responsibilization is, however, problematic if the causalities remain vague or unproven or if the process ends in a social practice of blaming and loss of solidarity [ 83 ]. At least for societies with a publically financed healthcare system, this tackles a cultural development corresponding to individualization and self-optimization [ 84 ] that needs to be discussed and critically reviewed in future work. The use of such arational persuasive appeals designed to convince consumers to undergo a genetic test would not be ethically acceptable in face-to-face genetic counselling.
This gap reflects the ethical divide between medical ethics and market principles. Thus, while genetic counselling per definition does not operate with persuasive communication methods but ideally aims at an open-ended, non-directive process, this claim is not inherently respected in DTC GT commercial practices.
The communication aims are in the former medical-consultant while in the latter profit-oriented by nature. We consider two counter-arguments one can raise against this statement. People are used to being confronted with influencing messages, so there is nothing to worry about. Even though the first part of this statement is factually correct, it would not affect the validity of criticism of the use of persuasive means. On top of that, this argument is a good example of an is-ought problem: just because it is the case that people are constantly confronted with persuasive appeals as consumers this does not mean that this should be the case or that it is not ethically problematic.
As Rothschild [ 85 ] suggests, marketing of public health issues in order to get people to adopt certain behaviors or attitudes may be more effective for public health than education or even the coercive force of law, and may be therefore ethically justified. However, this is only true if the aim of getting as many people as possible to undergo predictive genetic testing can be clearly, uncontroversially identified as good in itself. This is, however, not the case as the ongoing controversies concerning the clinical and personal utility show, whether for medical or personal purposes.
Even if it were, the means by which this end is achieved remain ethically problematic which affects the quality of that end. Research on the use and effects of DTC GT on health behavior has, thus far, not provided clear evidence of health benefits or significant positive changes in health behavior [ 18 , 86 , 87 ]. Contrarily, we have to consider risk compensation as a potential side effect of having personal risk information providing a feeling of safety, leading to deterioration instead of improvement of health behavior [ 88 ].
As we have argued above, DTC GT websites as marketing and advertising platforms contain persuasive messages and arational appeals that pose ethical problems. Apart from the ethical tension between solidarity- or market-oriented health care as such, our analysis points at a more fundamental problem.
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The question is how the public and patients can be empowered to detect and reflect the complex, persuasive forms of communication that is taking place increasingly in a digitalized market. This, however, seems inappropriate, given the critical nature of genetic risk information and its possible impacts that warrant a careful weighing of options. While there is no clear evidence that DTC GT leads to actual harm in consumers, it remains problematic to address them in a way that is meant to influence their decision-making.
The fact that the issue of harm has been investigated repeatedly [ 18 ] shows that there is some agreement among scholars that there is at least a risk for harm. We believe this risk should be clearly communicated and not distracted from. The modes and contents of the advertising messages should therefore be considered in ethical assessments of DTC advertising of genetic testing. We suggest that the actual implications of genetic testing for consumers should be in line with the values and ideas the advertising appeals to, apart from the question whether harm is involved or not.
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We have further compared the commercial modes and methods of communication with the standards in place for medical genetic counselling and discussed examples of DTC GT website communication that reflect these problems. We do recognize that there is a variety of reasons why consumers purchase genetic tests and that they may have personal utilities and different values for them that go beyond clinical utility [ 89 ].
Nonetheless, the literature on user motivations also shows that improving health is among the most important factors [ 17 , 90 — 92 ], and there are also studies that have shown that advertising contents correspond to this motive [ 93 ]. Our findings do not allow for a full proposal of recommendations for policy changes in the regulation of DTC advertising of genetic testing, yet we suggest that multimodal analysis of communication content should be considered in ethical examinations of such advertising to gain an in-depth understanding of the explicit and hidden messages of such communication which are both ethically relevant.
To gain better understanding of the persuasive appeals in DTC GT, it is necessary to develop a methodological approach that allows us to pay more attention to the details and also visual components to reveal the moral and scientific messages in detail. As some companies have seized selling tests directly to consumers and involve doctors as gatekeepers instead, there may be a shift in the ways they address consumers and advertise their services, posing an interesting field of future empirical research.
This work was partly supported by the Swedish Riksbankens Jubileumsfond grant no. Both authors read and approved the final version of the manuscript. Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. While parallels are worth mentioning, the nudging debate revolves around the question whether it is permissible for the state to nudge citizens for their own good [ 43 ]. This does not mean, however, that this type of influence does not follow certain principles or that the way it works does not have its own rationale.
Arational means are means that are meant to bypass the reasoning process by making someone feel in a certain way instead of giving them something to think about. For a detailed discussion see Sawicki [ 49 ]. Manuel Schaper, Email: ed. Silke Schicktanz, Email: ed. National Center for Biotechnology Information , U.
BMC Med Ethics. Published online Jun 5. Manuel Schaper and Silke Schicktanz. Author information Article notes Copyright and License information Disclaimer. Corresponding author. Received Feb 3; Accepted May This article has been cited by other articles in PMC. Abstract Background Commercial genetic testing offered over the internet, known as direct-to-consumer genetic testing DTC GT , currently is under ethical attack.
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. Keywords: Direct-to-consumer genetic testing, Communication ethics, Advertising, Genetic Counselling, Persuasive communication. 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, in consequence, attitudes and behavior.
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Results Overall, we would like to highlight three main critical areas: 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 moral self-conception. Open in a separate window. Discussion The use of imagery of the type from the first example works as a trust-building device relying on the power of the image of the medical profession.
Conclusions As we have argued above, DTC GT websites as marketing and advertising platforms contain persuasive messages and arational appeals that pose ethical problems. Funding This work was partly supported by the Swedish Riksbankens Jubileumsfond grant no. Notes Ethics approval and consent to participate Not applicable.
Competing interests The authors declare that they have no competing interests. Footnotes 1 Similar concerns are being discussed in the debate about nudging. Contributor Information Manuel Schaper, Email: ed. References 1.
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