Abstract
In a capitalist economy, reporters, scientists and corporations operate under similar structural constraints. Institutional pressures lead to the creation of a science-media complex that adduces inconsistent messages, confuses the public and fails in its basic role to promote the public good. The public lacks a normative understanding of basic scientific information, including genetics, and strongly rejects jargon and findings that are perceived as discriminatory. Sophisticated television and online marketing campaigns exploit public misunderstandings and convince low-risk people to purchase unnecessary genetic tests. However, successful corporate marketing indicates how public health practitioners can successfully craft a behavior change intervention. The media’s formative role in the creation of public discourse has been extensively studied with respect to genetics; to some extent vis-à-vis general genetic testing; and, not at all, as regards prenatal screening. This paper will argue that the status quo of ignorance and profiteering demands regulation of deceitful genetics advertising and cooperation amongst journalists and geneticists to advance meaningful understanding of prenatal testing in the United States.
Manufacturing News and Science: The Science-Media Complex
In the American capitalist economy, reporters and scientists operate under similar structural constraints. Perversely, “journalists are paid primarily to attract demographically valuable audiences so that advertisers will pay high rates” (Condit 2007:815), institutional roles that conflict with ostensible public duties. The inexorable pursuit of grant money can cause scientists to vest their interests in hyperbolic reporting, while professional territorialism causes them to refrain from principled criticism of other scientists’ works (Geller et al. 2005:202). Similarly, “research with positive results may get reported more often than research with negative results” (Geller et al. 2002:773). Therefore, the American mass media and genetic researchers paradoxically act as guardians of the public welfare and are incentivized to propagandize it, leading to the creation of a collusive science-media complex.
This paper will review the nexus of media reporting and the public’s understanding of genetic testing, which has been widely studied, with an emphasis on prenatal testing, which has not. I will argue that journalists and scientists are shirking their basic duties to educate and protect the public and offer three evidence-based solutions: 1) professionals should cooperate on a sustained education campaign in prominent media; 2) this campaign should avoid jargon the public finds as discriminatory; and 3) policymakers should abrogate misleading genetics advertising.
Public Opinion
As one would expect in a paradigm that encourages theatrical journalism genetics journalism follows the framework of the science-media complex. As Geller et al. (2005:198) note, “it is well established that the mass media are the greatest source of science and health information for the public.” However, “the ‘hype’ and much of the key content in [genetics] articles [is] in parity with the original scientific articles” (Condit 2007:815). Consequently, “there is substantial evidence that media coverage of genetics, and public reaction to such coverage, is selective, inaccurate, or unbalanced” (Geller et al. 2005:199). For example, the public often confuses “non-genetic screening tests for cholesterol with genetic tests” (Condit 2010:6).
Several researchers have reviewed opinions on genetic testing in some depth. Khoury (2000:198) contends that “early discoveries of severe and often incurable conditions may have raised concerns about genetic determinism (e.g., Tay-Sachs disease, Huntington disease.” Recent opinion polls demonstrate that “about one-quarter to one-third of the US public endorse genetic determinism” (Condit 2007:817), an inaccurate view of genetics that ignores the interaction of genes and environmental factors in determining most health conditions. Moreover, “polling data and focus group data suggest that individuals see the greatest role for genetics when it comes to physical characteristics, followed by psychological characteristics, with social attainment being seen as the least likely to be strongly influenced by genetic causes” (Shostak et al. 2009:81). Uncertainty “facilitates people’s ability to pick and choose their beliefs with regard to their own future health in ways that may be suboptimal” (Condit 2010:3). Secondly, people misunderstand “sex-related dimensions of inheritance….As many as half of lay people tend to fail to realize that breast cancer can be inherited from a father” (Condit 2010:3), leading to gender-based stigmatization.
Public and professional knowledge of prenatal screening is even weaker (Green et al. 2004:2). “Women do not possess the required understanding of prenatal tests to be able to make an informed choice,” a violation of medical ethics (Berg et al. 2005:332). Similar ignorance of prenatal screening also extends to nurses (Skirton and Barr 2010:600). Nevertheless, the public has high rates of acceptance for prenatal genetic screening (Hewison et al. 2007:423), which increases even further if women perceive it as culturally normative (Stefansdottir et al. 2010:2), have more knowledge of the practice, or support abortion (Tercyak et al. 2001:74). Unfortunately, “limited information is available on how knowledge of prenatal screening, education level and former experience of disability affect the decision to participate in prenatal screening” (Stefansdottir et al. 2010:2). Despite these limitations, prenatal screening ultimately reassures many couples and is desirable from a public health standpoint (Khoury 2000:200).
Language and Power
Language can create cognition and reinforce dominant power structures, leading to mistrust of some aspects of genetic testing. In scientific parlance, people can be dehumanized “to a disease or physical condition such as ‘sickle-cell victims’ and ‘dwarfs,’ or further reduce[ed] to their DNA: ‘sickle-cell carriers’ or ‘BRCA1 positives.’” (Condit 2007:819). The public rejects genetic jargon and findings perceived as discriminatory, particularly with the term ‘mutation,’ conflating genetic changes with “the negative identity of an individual,” i.e., being a ‘mutant’ (Condit 2010:5). It is feasible to suggest that a discursive normal/mutant framing may cause women to feel loss of control over their bodies and thus lead to increased abortion rates, although no research could be found on this possibility.
Rejection of genetics and race is uniform across large sectors of the American population, and independent even of race, class and political orientation, attitudes warranted by the tragic history of ‘scientific’ justifications of discrimination (Shostak et al. 2009:77-78). Indeed, public concern over discrimination seems to be stronger than consistent beliefs about genetic determinism:
Genetic explanations for perceived racial group differences are associated also with measures of modern racial prejudice….In contrast, genetic attributions for differences in sexual orientation are associated with greater tolerance towards homosexual men and women (Shostak et al. 2009:80).
Also, despite clear racial disparities in health risks, “most African American and White American participants in a series of focus groups expressed deep suspicion of a message and general framework that suggested drugs should be assigned based on a person’s attributed racial group. Respondents both rejected the message and evinced a strong preference for personalized genetics over race-based genetics” (Condit 2010:5). Although “African Americans and Latinos are more eager than whites to avail themselves of both prenatal and adult genetic testing,” “blacks [sic] endorse genetic explanations of mental illness significantly less than” whites (Shostak et al. 2009:79).
Language changes the acceptance of genetic testing. For example, Hewison et al. (2007:423) found that desirability of prenatal genetic screening increased with the severity of the disease that could be hypothetically tested for. Willingness to consider abortion followed similar patterns. Numbers willing to consider both were nearly identical: 85% of patients said they would both seek screening and consider abortion for anencephaly and 35% said they would do both for gender, the “most” and “least” severe conditions offered in the study, respectively.
Behavior Change: Print; Television; Internet
Given the weak public understanding of genetic testing, a number of studies have examined the feasibility of behavior change through print media, television and the internet. Smerecnik et al. (2010) found that study participants who read a (fake) news article on genetic testing in a prominent publication did not change their behaviors or beliefs. They conclude that “media coverage of genetics may not be effective to promote precautionary action” (Smerecnik et al. 2010:951). Unfortunately, the type of news proffered by science reporters is biased towards such single-story approaches (Geller et al. 2005:200).
Corporate marketing campaigns have been demonstrated to be much more persuasive. “The first direct-to-consumer advertising campaign for genetic testing” (Geransar and Einsiedel 2008:15) and has been studied extensively. Lowery et al. (2008) discovered that the television advertisement “was the media most commonly recalled” media by the target audience (Lowery et al. 2008:893). The campaign changed knowledge and actions significantly:
Women at high and moderate genetic risk were more likely to recall having seen the advertisements for BRACAnalysis than were women at low risk (60%, 57%, vs. 39%). Among women who could recall having seen the ads, about 40% said that they were more interested in having the BRACAnalysis test after seeing the ad; this percentage was slightly higher in the high-risk group (48% vs. 39% moderate risk vs. 32% low risk)” (Lowery et al. 2008:890).
Furthermore, a study at Kaiser Permanente Colorado found
…an increase in genetic counseling referrals during and after the time of the Myriad campaign, the majority of which were for low-risk women” (Lowery et al. 2008:892).
Considering that “among those with less education, sensationalist media coverage of genetic research may be more persuasive” (Shostak et al. 2009:89), class differences may partially explain the great success of this television ad compared to the news article (Smerecnik et al. 2010).
The pursuit of profit leads to similar undesired marketing of online genetics testing. Geransar and Einsiedel (2008:21) note that “almost half of patients attending a genetics clinic reported searching for genetic information online prior to their visit, and 4 out of 10 of these individuals reported feeling confused by the information they had found.” In a detailed review of all English language genetics testing websites (n=29), Lachance et al. (2010:309) report that “a much greater proportion of sites described the benefits of testing than the limitations inherent to these tests and their interpretation.” Additionally, “average reading level was grade 15,” “far above the eighth to ninth grade reading level of the average US adult.” This deception is almost certainly intentional. Promoting consumption of medical tests by those least likely to benefit from them is an undesirable public health outcome promoted by the capitalist accumulation of profit (Wallerstein 1996:90).
Suggested Interventions
Evidence concerning genetics testing in various media strongly suggests the need for a journalistic marketing campaign, or repeated news stories of a similar theme Months-long campaigns are not uncommon in major media . One possibility is to create a legitimate news campaign to enhance public understanding of the risks and benefits of genetics in medicine. Condit argues (2010:6) that a first step is “to identify both relevant knowledge and theoretically based components of knowledge people actually use or profitably use in their decision making.”
A feature of such a campaign should be a revision of language and presentation that offend people and cause them to reject more important health messages. As demonstrated earlier, both the term ‘mutation’ and the linkage of genetics and race are harshly perceived by the public. As Condit (2007:819) notes, “there is simply no reason for this scientific term [mutation] to be used in communicating with the public, for whom it connotes the monsters of science fiction.” Similarly, models of racial-genetic determinants of disease have proved vacuous and been discarded in favor of socioeconomic-environmental models (Dressler et al. 2005).
From a policy perspective, the success of television and online marketing in affecting consumers’ beliefs and actions necessitates regulation. Lachance et al. (2010:31) argue that advertising regulations for genetic testing should mirror pharmaceuticals’, with mandatory disclosure of side effects. Thankfully, some private sector companies have acted voluntarily to inform the public, as “major search engines…now generate results with government-funded organizations and nonprofit entities at the top” (Geransar and Einsiedel 2008:21).
Conclusion
The public lacks a basic understanding of fundamental information on genetic testing. Economic pressures on reporters and geneticists conflate to create journalism lack context, abrogates ethical responsibilities and allows prevaricating companies to exploit public confusion. Unfortunately, “there is scarce empirical research into the effects of mass media health messages about genetics on persuasion and precautionary action” (Smerecnik et al. 2010:942). However, corporate America has already shown the way with successful behavior-change interventions on a large scale. This paper argues that geneticists and journalists should orchestrate a media campaign with the goal of educating the public on basic issues of genetics and health. Such a campaign should be user-friendly and incorporate benign language in concert with regulation of advertising of genetic testing. If greater public understanding and health can come from planning between scientists and journalists, these groups are ethically obliged to cooperate and sacrifice the golden calves of elitism and profit.
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