Diagnosing the Geno-hype: Genetic Determinism in the Mass Media Ellen
Dupont The initiation of the Human Genome Project in 1990 kicked off a new era in molecular biology and biomedicine. As the scientific community set out on a quest to uncover the secrets of human identity hidden deep within our genome, the public’s excitement was palpable—and the media was there to report every new discovery. News articles reporting advances in genetics research seized public attention with titles announcing the discovery of genes for everything from alcoholism to autism to altruism. The trend has continued as more behaviors, characteristics, and diseases are linked to specific genes. Most human traits, however, do not reduce to such simplistic genetic explanations. Scientists have long been frustrated with media coverage of their research, in part because it leads to public misperceptions; in this case, does the popular version of genetic research foster a belief in genetic determinism, and if so, what are the implications of such public misperceptions? The ‘gene for X’ fallacy, which implies that a single gene is responsible for a single phenomenon (a trait, characteristic, or disease), is an established trend in mass media coverage of genetics research, and it may be contributing to a public attitude of genetic determinism . Genetic determinism—“the idea that genes are the only major contributor to the form, behavior and life course of an organism” —was more commonly accepted in the past, when molecular biologists were beginning to discover the vast power of genes in directing human development. Early studies attempting to link genes to characteristics or diseases gravitated toward traits that lent themselves to being explained in terms of genetics, and some early discoveries fit the ‘one gene, one disease’ (OGOD) model. The idea that defective genes are largely responsible has been, and still is, a powerful tool in understanding certain diseases. The problem arises when the idea is applied beyond the scope of its explanatory power, extrapolated beyond the traits or diseases it can explain to others with more complex etiologies.
Modern geneticists have an increasingly accurate and nuanced understanding of the effect of the interaction between genes and environment on the development of an organism . Today, genetics research is not a race to determine which factor is the predominant influence on development; rather, it is motivated by the understanding that the interplay between the factors is different for any given disease or characteristic. Even strictly within the realm of diseases, identifying a genetic marker can mean vastly different things. Scientists identified the gene for Huntington’schorea, ahereditaryneurodegenerativedisease, in1993. The ‘Huntington’s gene’ is aptly named—anyone who has it will inevitably develop the disease at some point, and those without it never will . On the other hand, confidence in the diagnostic power of BRCA1, the original ‘breast cancer gene’, has changed over time. A 2008 study found that the lifetime risk of developing breast cancer for BRCA1 carriers is significantly lower and much more variable than previously thought . A final example demonstrates the importance of considering both genetic and environmental factors: Phenylketonuria (PKU) is a metabolic disease caused by mutations in the PAH gene. Carriers do not make enough of the enzyme that metabolizes phenylalanine, so the chemical builds up in the bloodstream, causing mental retardation and other adverse effects. But while PKU, like Huntington’s, is caused by a malfunction in a specific gene, the disease is not inevitable for defective PAH gene carriers because of the environmental component; in fact, most people who have the mutation suffer no symptoms at all. Since the problematic chemical (phenylalanine) is obtained through food, a carefully controlled diet limits the effects of the gene and properly treated patients experience no deleterious symptoms. PKU is a case in which a true understanding of the disease and the development of a treatment plan are only possible if both genetic and environmental factors are taken into account . Guided by examples like these and many more, the scientific community has largely abandoned strict genetic determinism, instead subscribing to a more comprehensive explanatory theory that posits the interaction of genes and environment as key to a person’s development . Molecular biologists and geneticists are making continual progress toward understanding the complex forces that shape human life, but while media coverage of genetic science has been increasing, it seems that public understanding is not keeping pace . Though scientists have abandoned genetic determinism, opinion polls show that almost one third of Americans still subscribe to the idea .
When in search of medical and science news, the public turns first to the mass media [8,9]. Unfortunately, inaccurate and misleading media portrayals foster public misunderstanding of the fundamentals of genetic science . Scientific findings follow a circuitous path and pass through numerous intermediaries on their way from the laboratory to the newsstand, and both the scientific and journalistic communities share responsibility for the way results are portrayed. With gene-based therapeutic applications already in use and personal genome sequencing becoming more affordable and widespread, comprehensive and unbiased coverage is essential to promote the public understanding necessary for members of society—both as patients and as voters—to make informed decisions regarding the direction, application, and regulation of genetic research . Scientists have often been unhappy with the press’s coverage of their fields; the two groups are driven by differing, sometimes competing sets of values and motivations . Science reporters must first and foremost attract readers, a difficult task when competing with more attention-grabbing topics like war and pop culture. Likely in response to this pressure, two trends have emerged in media coverage of genetics: oversimplification and sensationalism . In an attempt to simplify complex concepts for public consumption, reporters often use metaphors that misrepresent genetic mechanisms , calling genes a ‘medical crystal ball’ (which inaccurately insinuates that they are reliable predictors of future health) , a ‘blueprint’, or a ‘recipe’ (both of which are problematic because they suggest conscious design) . Journalists also tend to make the mistake of leaping from correlation to causation, assigning or implying causal power where only associations have been found, and frequently downplay or altogether ignore the role of environmental influences . In 2003, Science published a study linking a certain gene-environment interaction with depression, specifically the association between a certain allele of the 5-HTT gene and stressful life events. Two years later, an analysis of press coverage of the study found that while the original article clearly indicated that the allele alone was not correlated with depression, media coverage still framed the study’s results as a discovery of the ‘gene for depression’ . Sensationalism may be even more problematic. Many articles describegenetics researchas presentingeitheranopportunityformiracles or, occasionally, an imminent threat—and including both aspects brings added controversy . This hyperbole is especially common in reference to genetic engineering.
Coverage of a 1993 experiment that successfully “twinned” a nonviable human embryo diverged dramatically. Across the board, the media assumed the technique had essentially created an applicable human cloning technology, but while the Los Angeles Times celebrated the results as the dissolution of physiological barriers to pregnancy, Time magazine warned of a “Brave New World of cookie cutter humans” . Confused, the public has developed the somewhat dichotomous view that genetics simultaneously offers the potential for both utopian and dystopian futures . Though many are quick to blame journalists for misrepresenting scientific findings, some evidence suggests that fault does not lie solely withthemedia. Inmanycases, thetoneandgeneralhypethatcharacterize genetics reporting actually closely mirror that of the original scientific publicationsitcovers—bothoveremphasizethepositiveaspectsofgenetic discoveries and associated technologies. According to a study published in the Journal of the Canadian Medical Association, though newspaper articles and scientific journal articles are equally likely to discuss potential benefits of a genetic discovery (97% and 98%, respectively), geneticists’ publications are three times less likely to discuss costs or risks associated with the findings than the newspaper articles that cover them (5% compared to 15% of newspaper articles) . This makes sense; journalists aremotivatedbythepressuretoattractreaders, sosensationalismineither direction will do. Geneticists’ bias is more unilaterally positive, as they are motivated by their earnest enthusiasm for their work as well as the constant pressure to gain visibility, which is key in drumming up both public support and funding . Scientists are aware of how powerful a tool the media can be and have learned to use it to their advantage . Both geneticists and journalists play a role in the process that ultimately leads to the news coverage that reaches the American public. ARIZONA STATE marker for a disease to developing a therapeutic treatment [2,8]. While it garners attention in the short term, headlines that promise “New Hope for Victims of Disease” may breed feelings of betrayal in the public when suggested therapies do not materialize [1,2]. Eventhehopes bredbythemedical possibilities of genomemapping bring concomitant fears. Thesametest that can identify ahealth risk might be a health risk in itself if health insurance companies view a genetic predisposition to a disease as a pre-existing condition. Public anxiety regarding privacy violations and genetic discrimination was the most commonly cited concern about the sequencing of the human genome . Congress passed the Genetic Information Nondiscrimination Act of 2008, which prohibits insurance companies and employers from discriminating against individuals based on genetic information . Science, law, policy, and public opinion are guided by a tangled web of influence: the scientific community chooses the direction of future research, but is largely influenced by funding, apportioned by politicians who are keenly aware of public opinion, which is in turn shaped by the media. Genetic determinism has potential implications in numerous facets of society: social and legal responsibility are at risk as criminal defense teams begin to cite defective genes as a source of criminal behavior ; hype of gene therapies and failure to produce results may contribute to public distrust of the scientific community ; fear of discrimination by employers and health insurance companies has already necessitated legislative action from Congress [1,17]; and public misunderstanding itself can be a direct problem as personal genome sequencing becomes more widely available and less expensive .
The new questions raised by these issues stem at least in part from the idea of genetic determinism perpetuated by the media’s favored ‘gene for X’ frame. The solution, like the problem, will be multifaceted. Several pathways of communication are key: from scientists to doctors to patients, from scientists to the media to readers, and from scientists to policymakers. All of the groups involved must collaborate to enable public education and ensure that our society is reliably informed. Only then can we can greet the often exciting, sometimes revolutionary scientific breakthroughs in genetic research with informed appreciation instead of misguided hopes, fears or prejudices. Ellen Dupont is a student at Arizona State University. This coverage, however, often does not accurately represent current scientific understanding of the role and function of genes and may be pushing public perceptions toward the idea of genetic determinism [1,2]. A further problem lies in identifying the implications of public acceptance of genetic determinism. A look into America’s not-too-distant past provides an example of the possible consequences of such beliefs. Though the modern understanding of the gene did not exist in the early 1900s, a similar belief in the exclusive power of heredity gave rise to the American eugenics movement—the so-called self-direction of human evolution, which eventually led to the forcible sterilization of tens of thousands of people . It is noteworthy that the qualities of these ‘socially inferior’ citizens that warranted involuntary sterilization during the eugenics movement—“the feebleminded, the insane… the inebriate, the diseased” —find close parallels in the traits that society is so eager to label as genetically determined today: retardation, schizophrenia, alcoholism and countless diseases. Today, the consequences of genetic determinism take a different form. The tone of some media coverage borders on resignation to the idea of an immutable future prescribed by our genetic makeup . The idea has even found its way into the courtroom, as an increasing number of legal defense teams consider turning to behavioral genetics as a mitigating factor in criminal cases [15,16]. How such evidence, if deemed admissible, will be viewed by judges and juries remains to be seen; though the presence of a certain ‘violence’ or ‘aggression gene’ could partially absolve a defendant of responsibility, it might instead be used as a rationale for a harsher sentence . The iconography of media coverage suggests the issue is already being debated: “Born Bad?” asked the title of a 1997 U.S. News & World Report cover story, superimposed on the image of an infant dressed in prison stripes . Genetic determinism itself is a significant problem, but it gives rise to others as well: namely, public expectations of forthcoming gene-based therapiesandapprehensionabout potentialabusesofgeneticinformation. Media hype that overemphasizes the role of genes in determining disease suggests an obvious corollary—the possibility that cures lie within the realm of the genome as well. Indeed, a common trend in coverage of breakthroughs in biomedical genetics is the portrayal of therapeutic applications as right around the corner; the media often fails to emphasize the painstaking and lengthy process of moving from identifying a genetic
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