Given the increase in the prevalence of prenatal testing for disabilities and the options following positive test results, this study investigates how information about prenatal testing and disability is represented in the top 30 newspaper markets in the United States. The goal is to examine how print media convey information about prenatal testing for disabilities to its readers. Analyses of 148 full-text articles from 1998 to 2006 indicate that disability is represented in negative terms. The negative framing of disability is paired with positive representations of prenatal testing, and to a slightly lesser extent, positive representations of termination of pregnancies involving a fetus diagnosed with disabilities.
In January of 2007, the American College of Obstetrics and Gynecology (ACOG) released new guidelines recommending that all pregnant women, not just women over the age of 35, be offered prenatal "fetal chromosomal screening" and, if warranted by the screening, prenatal diagnostic testing. The ACOG recommendations suggest that women want screening for "peace of mind" and "to be prepared for a baby with a genetic defect." Furthermore, the recommendation also proposes that "A woman's decision [to pursue more invasive diagnostic testing]…is based on many factors, such as a family or personal history of birth defects, the risk that the fetus will have a chromosomal abnormality or an inherited condition, the consequences of having an affected child, the risk of pregnancy loss from an invasive procedure, and the options for earlier termination." In other words, the ACOG recommendations are presented as "neutral" - neither prejudicial to individuals born with congenital disabilities, nor advocating that women terminate such pregnancies, but clearly outlining the range of possible options.
Most pregnant women and their partners, however, do not have direct access to ACOG or their recommendations. As Kline (2003) points out, medical discourse such as that in the ACOG recommendations "must be rendered intelligible and accessible through mass-mediated sources" (p.560). The media do not control public opinion, nor is there a linear relationship between information sources and audiences. Increasingly, scholars have embraced the notion that there is a transactional relationship between media and the public; in other words, media is embedded in a social context and ideologies that inform their reporting of news and events while society is reciprocally influenced by mediated messages. Thus, although the media do not solely frame how individuals will interpret the recommendations, they do provide a starting point for the discussion.
The question, then, is whether the media presents information about prenatal screening, from ACOG and other sources, as neutral or unbiased, as well. Many people receive a significant amount of their health information from the media, and as Ten Eyck and Williment (2003) note, the public's knowledge of genetic health information is obtained primarily through media consumption. Most health information consumers do not have direct access to scientists and researchers, nor are they able to read medical discourse, thus they rely on journalists to relay important and relevant material to them through accessible channels.
Despite the general public's reliance on mediated sources of information, the fidelity of journalists' representations of genetic information is called into question by several scholars (Powers & Andsager, 1999; Ten Eyck, Thompson, & Priest, 2001). In fact, as argued by Ten Eyck and Williment (2003), the media has significant control of the information that the public is exposed to, and can serve as gatekeepers of that information, yet that not all media representatives provide the same information. In other words, journalists and their larger organizations make choices about what is newsworthy, as well as the content of that information to be shared. Media members are embedded in a larger cultural milieu that determines what information is seen as important, legitimate, and newsworthy, thus journalists may also reflect social norms and values. Given the potential for journalists to both influence the views of prenatal testing, as well as the notion that they may be reflecting social views about the relevant topics, this study seeks to determine how media are portraying prenatal testing, specifically as it relates to disability.
Prenatal Testing Recommendations
After ACOG released its recommendations, the National Down Syndrome Congress (NDSC) (2007) issued a press release condemning the new ACOG testing guidelines arguing that they "convey tacit approval for terminating pregnancies where the fetus has Down syndrome." In other words, the NDSC believes that these recommendations, which received considerable news coverage, are not neutral medical recommendations, but rather ones that will increase the abortion rates of fetuses diagnosed with the condition. Similarly, Steven Calvin (2007), a Minneapolis physician and co-chair of the Program in Human Rights and Health at the University of Minnesota, asserted that the guidelines might protect physicians from wrongful life suits, but also convey acceptance of the idea that life with a disability is not as good as life without a disability. Further, he urged physicians to consider the real reasons that these tests are offered, even encouraged. Therefore, it is of note that what one group, ACOG, sees as neutral, other groups which advocate for the rights of persons with disabilities, may see as prejudicial.
The ethical and moral implications of terminating a fetus with a disability have been heavily theorized within the feminist and disability communities. Parens and Asch (2003) assert that terminating a pregnancy because the fetus may have a disability reduces the identity of a baby to the condition, itself. Instead, they argue that disability is a component of the individual that contributes to his or her identity, but is not the sum total. In fact, Asch (1999) argues that from a social perspective, disability is a difference that social constraints has defined and acted upon as a deficit. She notes that most people with diagnoses such as Down syndrome and Spina Bifida are happy with their lives and see themselves as healthy members of society, yet when they are denied access either by physical or material conditions of society, they are made to feel devalued. Thus, disability is not a medical issue that researchers should seek to eliminate, but rather a social issue of value and access that needs to be addressed.
Medical professionals are not unaware of the ethical and moral concerns surrounding prenatal testing and termination; in fact, the website for the Human Genome Project dedicated a section to the safe and effective uses of prenatal genetic testing for neural-tube defects, Tay-Sachs and Down syndrome. The author of that report (Markel, 1997) states the following:
The principal means of disease prevention for these disorders is pregnancy termination. There are prospective parents for whom abortion is not an acceptable alternative. Early 20th century eugenicists might call such a selection process negative eugenics (appendix 6).
Though these criticisms are well known, medical professionals hold that it is their responsibility to allow women to make informed choices about their pregnancy. Markel concludes the previous thoughts by stating that special interest groups, political lobbyists, and religious activists have clearly voiced opinions on the role of prenatal testing in our society, both pro and con and argues these debates bring a "high-stakes political element to the clinical arena" (Markel, 1997). Therefore, medical professionals must consider these implications and debates when making decisions about discussing testing advances and options with their patients.
Many scholars recognize sociologist Erving Goffman (1974) as the author of the term, "frame." In Goffman's work, a frame refers to schemata used by individuals to "locate, perceive, identify, and label" (their experiences while answering the question: "What is it that's going on here?" (Goffman, 1974, p. 21). Since Goffman's definition of frames as cognitive structures which unconsciously directs an individual's attention and define the given situation, social scientists have moved toward the investigation of manufactured frames, or conscious choices of communicators—politicians, experts, and journalists—those who intend to influence public opinion.
Druckman (2001) speculated that elites have a long history of employing frames strategically, but social science researchers are only beginning to understand how this process works. In this regard, Nelson and Willey (2001) argued that the term, framing, is best reserved for media messages that do not provide new information, but rather rearrange already known information. As for message producers, one of the findings suggested (Gitlin, 2003) that reporters borrow frames from each other for the purpose of convenience—such practice helps them orient in unfamiliar territory and process facts quickly and routinely to meet deadline.
Consistent with Goffman's perception of frames as the organization of experience, Nelson (2008) defined frames as "alternative descriptions or interpretations of the same information, problem, or solution" (p. 582). Frames, according to Nelson, guide how readers understand a problem and can cause them to make different judgments about the problem. Speculating about selectivity of media coverage, Gitlin (2003), suggested that media do not passively mirror society but actively spotlight certain events and phenomena. In Gitlin's opinion, "Media frames are persistent patterns of cognition, interpretation, and presentation, of selection, emphasis, and exclusion, by which symbol-handlers routinely organize discourse, whether verbal or visual" (p. 7).
Concerning the issue of media frames, F. Durham (2001) stated that the social power of journalism lies in the inclusion of certain voices in social discourse and exclusion of others. In Entman's (1993) terms, "[T]he omission of potential problem definitions, explanations, evaluations, and recommendations may be as critical as the inclusions" (p. 54). A number of researchers (Bubela & Caulfield, 2004; Clarke & Binns, 2006; Ten Eyck & Williment, 2003) have found that the medical frame dominates in news reporting on medical issues. In case of prenatal screening, predominance of the medical frame may not leave room for a full assessment of a prenatal diagnosis as a physical procedure, as well as a process that might have a dramatic emotional outcome.
The power of the communication text lies, among many other dimensions, in the exemplars. In modern society, the main conductor of exemplars is media. A disadvantage of this situation, according to Zillmann (1999) is the fact that often the audience does not know how often an event happens and thus, the audience might only infer how typical or atypical particular events are. Moreover, Zillmann pointed out that exemplars have the power to influence people's perception and judgment of issues or events that they observe or participate in. Gitlin (2003) suggested that because of media persuasiveness and accessibility, they help orchestrate people's consciousness and became the main system of the distribution of ideology.
Framing Medical Issues
Given that people use newsprint media as a source of health-related information (Winsten, 1985), it is not surprising that multiple studies have examined how newspapers portray genetic health issues in their coverage (Clarke & Binns, 2006; Donelle, Hoffman-Goetz, & Clarke, 2005; Powers & Andsager, 1999). Clarke and Binns (2006) conducted a content analysis of high-circulation Canadian and American magazines and found that the medical frame out-weighed lifestyle and social structural frames in the portrayal of heart disease. Moreover, their latent analysis revealed that the magazines employed, among others, such frames as optimism about medicine and heart disease as an individual responsibility. Similarly, Bubela and Caulfield (2004), in their study of media coverage of genetic research in four Western countries, found that newspapers and scientific journals overemphasized the benefits of genetic research and underrepresented its risks. Craig (2000) examined ethical language and themes in news coverage of genetic testing and found that broadcast and print media emphasized concern about the future, particularly, avoidance of harm, whereas ethical issues did not receive much attention. Further, focusing on coverage of genetic technologies in the New York Times and the Washington Post, Ten Eyck and Williment (2003) noted, "Medical technologies, even in light of some tragic outcomes, enjoyed positive coverage" (p. 144).
Concerning restrained and thoughtful reporting, Donelle, Hoffman-Goetz and Clarke (2004), in their study of media portrayal of genetic risk for breast cancer, suggested that a balanced approach of presenting genetic information, which includes positive (chance of survival) and negative (chance of death) frames makes this information effective. Meanwhile, reiterating the findings of Levine (1999), they argue: "The journalistic notion of risk is often exaggerated in order to grab the attention of readers. Even reporters trying to 'get it right'—are often pressured by editors wanting to shape the story to increase circulation and distribution (p. 107). For instance, Powers and Andsager (1999) stated that early reporting (1992-93) on breast implants was sensationalized and one-sided focusing on the harm and health risks of implants, though in later years (1994-96) the stories focused less on personal health risks and more on the damage done to implant manufacturers. Ultimately, they argue that coverage at any time point needs to be fair and balanced and that even if there is balance across years, that balance needs to occur within time periods, even stories.
Idealistically, then, journalists need to remain balanced in their reporting of medical issues because stories' frames may impact public health (Walsh-Childers, 1994). Helping readers reduce uncertainty and make informed decisions, media then diminish personal risks associated with health care practice. The issue of exaggeration in news reporting acquires a special meaning today when the U.S. public perceives scientists to be more trustworthy than representatives of other professions, thus, giving them carte-blanch in defining medical discoveries and technologies as progressive and advantageous (Ten Eyck & Williment, 2003). The media tend to reinforce conventional definitions of health problems and, hence, the legitimacy of various solutions. News stories about medicine "may increase or diminish the willingness of individuals to present themselves for care, and raise expectations, and dash hopes, or may provoke alarm" (Winsten, 1985, p. 7).
Meanwhile, discussions of medical research from a purely progressive frame do not always benefit society. For example, Liamputtong, Halliday, Warren, Watson, and Bell (2003) argued that prenatal screening that is routinely considered to reduce worry and pressure in a pregnant woman, in reality might produce the opposite effect, inducing stress and anxiety, which in turn, might affect the unborn baby. As Dorgan, Williams, Parrott, and Harris (2003) found, women often see prenatal testing itself as "Pandora's Box" (p. 103). Though testing can empower women with information about their fetuses, it can also increase fear, ambiguity, and even anguish. As noted by one interviewee in the Dorgan et al., (2003) study, simply knowing that a fetus has a possibility of disease or disability forces a woman to wrestle with choices about continuing the pregnancy, guilt for terminating the pregnancy, or the anguish during the pregnancy knowing that a child will be born with risk markers for a genetic condition, or a disability.
Prenatal testing as a phenomenon of our post-industrial world might be explained to some extent by such a specificity of modern decision making as a desire to control outcomes, which opposes reliance on destiny (Markens, Browner, & Press, 1999). However, researchers note that often times pregnant women choose prenatal screening because of the pressure from physicians —- or undergo testing as part of "routine" care, without even recognizing there is a choice that they can make (Liamputtong et al., 2003; Markens et al., 1999; Tuchman, 1978).
The power of the "medicalization" of pregnancy and disability might be also explained by the media's selective approach to covering this sensitive topic. Such an approach might be based on, first, media professionals' belief that they are more qualified than their readers to determine what the audience is interested in (Tuchman, 1978) and, second, journalists' reliance on statements by certified authorities (Gitlin, 2003). Meanwhile, as "interpretive communities" (Zelizer, 1993), journalists must bear responsibility for affecting the values, principles, and expectations of those who trust them to present unbiased reports of important issues.
Given the power of the media to frame issues of prenatal testing and disability, particularly in light of increasing advances in genetic technology, we analyzed media frames employed by leading national and regional newspapers in the United States. We posed the following research questions:
RQ1: What types of disability are most commonly discussed in prenatal testing stories?
RQ2: What frames about disability are present in newspaper coverage on prenatal testing?
RQ3: In stories of prenatal testing, is testing presented positively or negatively?
RQ4: If termination is mentioned following testing, how is termination discussed?
RQ5: Is there a relationship between the disability and prenatal testing frames?
RQ6: Is there a relationship between the disability and termination frames?
In his essay examining media effects, Potter (2011) acknowledges that despite the increasing number of media channels that expose people to messages, little work has been done to define "mass media," itself, but rather work focuses on the variety of ways that exposure to mediated messages occur. He notes, "the mass media are much less interested in coaxing people into one exposure than they are in trying to get people into a position where they will repeatedly and regularly be exposed to their messages," (p. 905). He further argues that each channel continues to exert influence by affecting what other media cover, as well as by setting a tone for discussions among a constellation of media, people and social institutions.
Thus, though newspapers are only one component of the media, they allow a window into the discussion. In addition, they provide a permanent and searchable record, whereas web information is regularly changed, updated, and even deleted, and television and radio are often difficult to access after an initial broadcast. Moreover, Bryant and Thompson (2002) note that health news coverage is important because it seen as a credible source that can shape the views of the policy makers.
Stories addressing the issue of prenatal testing for disabilities in each of the top 30 population areas of the United States, determined by U.S. Census Bureau, were chosen for analysis. We then chose the highest circulation paper in each region to provide a representation of newspaper story exposure to paper readers in diverse areas of the country (Appendix A).
The time frame analyzed stories from January 1998 to December 2006. This eight year sampling period represents a time of rapid development in prenatal testing research and diffusion. We searched first in Lexis-Nexis, and then followed-up with further searches on individual newspaper sites. 1 Key words searched were prenatal testing/tests, prenatal screening, amniocentesis, prenatal diagnosis, and pregnancy in conjunction with disability. Given that we are interested in how disability is framed in newspapers, not just hard news, we included both news and feature stories. This gives a more complete picture of how disability is framed throughout rather than biasing the view toward either hard news or in-depth coverage.
We originally started with all articles that appeared relevant to our topic using the appropriate key words. We began with over 300 articles, and eliminated those stories that focused on testing for the parents rather than the fetus, such as cystic fibrosis blood tests for parents, as well as sex-selection stories and embryonic stem-cell research and parents with disabilities rather than fetal diagnoses. None of these represented our key concern, which was the ways in which prenatal testing of a fetus for disability is framed in newspapers.
Our final sample consisted of 148 articles. The unit of analysis was the full-text of all news and feature stories that met the requirements for including. The coding sheet was developed inductively in response to clear themes and categories that emerged from the stories themselves in relationship to how issues of a) prenatal testing b) disability, and c) termination, were presented in the stories.
Coding Sheet and Training
After identifying the articles that fit the parameters of the study, the authors modified the method for creating a coding sheet used by Clarke and Binns (2006). Given that little research has been done about prenatal testing and disability, particularly in the media, the authors worked inductively to create the coding sheet. Each of the authors engaged in detailed, iterative readings each article, noting key themes, frames, and ideas that emerged from their readings, then came together to create the coding sheet for both manifest and latent codes. An outside coder (a doctoral student with no prior knowledge of the study) was then trained by the first author to use the codebook. The second author and the doctoral student then coded 20% of the data for reliability. Using Cohen's kappa, reliability ranged from .82 to .95, and was considered sufficient for all areas. Specifically, the Cohen's Kappa's for testing was k=.95, disability frame k=.88 and termination at k= .82. Following acceptable intercoder reliability, each coder then coded 50% of the remaining data. Coders discussed disagreements and tried to come to a resolution. The lead author made decisions when disagreements could not be resolved between the coders.
According to Clarke and Binns (2006), manifest content consists of items in the articles which are "explicitly stated" (p. 41), and thus need little interpretation to understand. Manifest content can be seen through key words or phrases. In this study, the coders were asked to note each disability or disease if that was mentioned in a story. Only the initial mention in each was recorded and multiple mentions were not included. The conditions listed on the coding sheet prepared by the authors were: Down (or Down's) syndrome, Huntington's disease, Edwards syndrome, Patau syndrome, Praeder-Willi syndrome, Tay Sachs syndrome, Cystic Fibrosis, and Other, with a line for coders to indicate the other conditions mentioned in the article.
As with disability or disease, coders were asked to code for the type of prenatal tests mentioned in the story, and only the first mentioned was noted. Types of tests on the coding sheet were: amniocentesis, chorionic villus sampling, fetal nasal bone measurements, nuchal translucency screening, blood tests (e.g. triple/quad screens, maternal serum screening, alpha-fetoprotein tests), ultrasounds, urine tests, and other.
Though earlier coding was manifest, we also coded for latent content to determine the framing of the issues present in the newspapers. In contrast to content that is explicitly stated, latent frames convey the "underlying, implicit meaning in the context of a text," (Neuman, 2000, p.296). Latent frames include not only what is said, but what can be inferred from the text, as well as what is missing from the text. In order to examine the latent frames, coders had to interpret the overall meaning of the article in relationship to particular topic areas.
Disability frames. The first frame examined was the overall presentation of the article's orientation toward the disability. The frame categories included the following:
- Disability as a gift, adventure, or joy. These stories would have provided an overall upbeat and positive view about the disability.
- Disability as natural or normal. Stories in this category would de-emphasize the difference of people with the diagnosis, and focus on the similarities.
- Disability diagnosis as reason for fear, sorrow, tragedy. In stories with this coding, a disability diagnosis was something negative or to be mourned.
- Disability diagnosis was discussed predominantly from a medical or technical frame. Stories in this category would include those focused on descriptions of the diagnosis in scientific terms, chromosomes, origin, life expectancy, etc.
- Other. Finally, there was a category for stories that could not be easily identified as representative of one of the preceding frames.
Thus, the goal of identifying these frames was to uncover the perceptions about disability that was evident in newspaper coverage about disability and prenatal testing
Prenatal testing frame. In addition, coders were trained to identify the different frames evident for prenatal testing. They were instructed to look for specific references to prenatal testing to determine coding for this category with three options: positive, negative or neutral/choice.
- Testing as positive. Statements such as "testing offers mothers-to-be peace of mind and more time to decide whether to end a pregnancy," and "testing is clearly a good thing," would be coded as positive perspective on testing.
- Testing as negative. Comments categorized as negative toward prenatal testing were similar to statements such as "testing is unnecessary for mothers-to-be," or "testing is simply a way to reinvent eugenics."
- Testing as neutral. Stories that provided testing information without valence, such as "testing is a way of determining the health of a fetus," and stories that made it clear that testing was an individual choice, such as "testing is a personal decision" were included in the final category, testing as neutral. Therefore, the goal of coding this information was to identify how testing is presented in newspapers: as something to be supported or avoided — or something that simply exists as an option for pregnant women.
Termination frame. Finally, in stories that mentioned abortion or termination, coders identified the frame for how termination of a fetus, identified as having a disability, is presented. The categories included:
- Matter of fact: Coders considered this the frame for stories in which termination was mentioned simply mentioned as an alternative. An example of this would be, "having an early diagnosis allows women time consider whether they should terminate the pregnancy."
- Controversial: This category was used if the story indicated that some are for termination and some are against, or focused on personal, moral dilemmas that can occur. An example of this category would include "termination following positive test results is an option, though some critics find the use of prenatal tests for this reason problematic."
- To be avoided: In this category, articles would discuss termination as a practice that is, or should be, condemned or discouraged. For instance, "many advocates find termination of a child with a disability immoral," would be an indicator that termination fit into this frame.
- Termination is useful or necessary: The fourth and final category consists of stories that refer to termination as a positive, useful, or necessary action. For instance, stories with this code would refer to saving fetuses from a hard life, or discuss how termination was the "best" alternative for the parents or fetus.
The first research question addressed the types of disabilities most frequently mentioned in stories about prenatal testing. Frequency data indicate that Down syndrome was mentioned in 92 of the 123 (76%) stories that mention a particular disability of the stories that discussed prenatal testing, followed distantly by Cystic Fibrosis (15%), Tay-Sach's (11%), Spina-Bifida (9%), and Huntington's (5%). Though, it is important to remember that the other categories that are distant to Down syndrome, with the exception of Spina-Bifida, can often be examined by tests to determine if the parents are carriers of the gene, unlike in most cases of Down syndrome that are conception-related events in which a pair of chromosomes fail to split. Clearly, though, Down syndrome is the focus of many of the prenatal testing stories.
Frames about Disability
The second research question asked, "What frames about disability are present in newspaper coverage?" An evaluation of these frames revealed that the most common frame in newspaper coverage was the fear/sorrow/tragedy frame with 37 articles (25%). In an article titled "Burden of Knowledge, Tracking Prenatal Health; In the New Tests for Fetal Defects, Agonizing Choices for Parents," Harmon (2004) reports on several parents who received prenatal tests that confirmed a diagnosis of some sort. One couple, who discovered that their child would have Down syndrome, decided that the child's quality of life would be too low to continue the pregnancy. The mother said, "I don't look at it as though I had an abortion, even though that is technically what it is," she added. "There's a difference. I wanted this baby." In other words, for this family, a baby with Down syndrome was a tragedy and a burden they were not prepared to accept, and thus she saw the termination as a loss, not due to abortion, but to disability itself. In other words, a baby with Down syndrome was not an acceptable option — or perhaps even a "real" baby, thus a termination was not actually an abortion, but a termination of an unfortunate abnormality. Another mother, whose baby tested positive for cystic fibrosis, said her marriage would not survive having a severely ill child. "My life would have been caring for my child, which would have been fine if she was be O.K.' … But she wasn't' going to be O.K." For this mother, care for a child has limits, and the diagnosis tested those limits.
The next most common frame was the medical/technical frame with 36 articles (25%). Stories with this frame identified the disabilities in primarily scientific terms. For instance, "Down syndrome is caused by an extra chromosome and the resulting excess production of proteins whose genes exist in the three copies instead of the usual two." (Wade, F2). Or, in an article on how Folic acid can contribute to neural development, Brody (2005) discusses the potential outcomes from Folic Acid deficiency: "They include Spina Bifida, an often crippling failure of the spine and back bones to close fully, and anencephaly, a fatal failure of the brain and skull to form properly" (Brody, 2005).
The disability as "normal" frame was apparent in 26 (18%) of the articles. Stories with this frame had comments such as "My daughter has a life…She goes out and plays with other children. She goes to birthday parties. She plays soccer. She rides horses and she smiles" (Nichols, 2001, 01B).
Next, the disability as joy/gift frame was evident in 17 (12%) articles. For example, a feature story by Sanchez (1998) said:
Anyone who sees only Cristina the retarded child misses: Cristina the monkey, shouting triumphantly at the top of her lungs, 'Mom, I did it!' after climbing the playscape tires for the first time; or Cristina the ballerina proudly performing in her dance recital (p. A11).In other words, in this frame, stories noted the normalcy of life with a person with a disability.
Finally, in 30 (21%) of the articles related to prenatal testing, a disability frame was not applicable because disability issues were not addressed, such as articles that simply mentioned updates on prenatal testing research, without disability featured in anyway, other than by name.
Of the 139 articles for which this information could be coded for the third research question, 2 "Is prenatal testing presented positively or negatively?" 73 (50%) presented prenatal testing as recommended, or otherwise as a good idea for pregnant women. In contrast, only 29 (20%) of the articles presented testing as a problem or something that should be avoided, while 35 (24%) indicated that it was a personal choice or were neutral on presenting it as a positive or negative phenomenon. Finally, 3 articles (2%) presented testing as controversial.
For the fourth research question, "If termination is mentioned following testing, how is termination discussed?" 92 articles were coded. The remainder did not mention termination. Of the 92 stories that mentioned termination, the first three categories were relatively evenly split with 32 (34%) in the "matter of fact" category, 24 (25%) in the "controversial" category, and 28 (30%) in the "to be avoided" category. The fourth category, "termination as positive or useful" contained only 8 (8%) stories.
In the "matter of fact" category, comments such as those found in an article called, "Early test can find Down syndrome" (Saltus, 1998). In this article several comments provided the impressions that abortion was a matter of fact option. For instance, after discussing how the a new test can help parents learn if their fetus has Down syndrome by the 11th week of pregnancy, Saltus says this is a benefit because parents no longer have to wait "until the second trimester, when the deadline for abortion looms, according to a study published today" (p. A8). Similarly, a comment such as "offering mothers-to-be- more peace of mind and more time to decide whether to end a pregnancy" (Johnson, 2A). After reporting on the medical advance, she continues by saying old tests are problematic because the results are provided when decision becomes "close to deadlines of 22 to 24 weeks after which most abortion providers will not terminate a pregnancy" (A8). Or, as noted by Christian (1999), when reporting the words of a geneticist from Baylor University "In general, most women who learn through diagnostic tests that they are carrying a child with Down syndrome choose to terminate the pregnancy, Leonard said" (D6). In this category, authors are not claiming that termination is necessarily a good option, but have presented it as one that women can, even do, exercise.
In the "controversial" category, Ehrenreich's editorial states: "The prejudice is widespread that a termination for medical reasons is somehow on a higher moral plane than a run-of the mill abortion. In a 1999 survey of Floridians, for example, 82 percent supported legal abortion in the case of birth defects, compared with about 40 percent in situations where the woman simply could not afford to raise another children" (2004, A5, p. 21). She continues by arguing that although disability rights groups have been vocal in arguing against terminating for prenatal diagnosis, she (Ehrenreich) will defend the right to choose. Thus, she acknowledges the controversy inherent in terminating fetuses with prenatal diagnoses.
In a similar vein, Dr. Alan G. Monroe, a director of a pregnancy center, wrote "How can society on the one hand protect the disabled and handicapped people through an enlightened law such as the Americans with Disabilities act, which criminalizes discrimination of the handicapped, and yet pursue a national policy of eugenics that discriminates against babies who have disabilities as a priori, having no value and being therefore, disposable?" (2005, B8). And, in a news story reporting on how pre-implantation screening can affect the probability of having a child with a prenatal detected disease or disability, Schulte (1999) offers the following comments in relation to a woman who carried the sickle cell gene, along with her husband: "Twice she had become pregnant. Twice early prenatal testing with amniocentesis showed the fetuses had the disease. Twice she had chosen to terminate the pregnancies." In this piece, the journalist acknowledged that sickle cell can cause "excruciating pain, organ damage, stroke and often early death," but also notes that any breakthrough in genetics research will be accompanied by questions such as "Do only genetically perfect children deserve to be born?" (p. A7). Thus, Schulte notes that termination, or even pre-selection of embryos becomes a controversial issue with implications for ethicists and moral deliberation.
Articles that represented the "avoid termination category," could be seen in such stories as a news report of Pope John Paul II's address that highlighted prenatal screening. Pasek (1999) reported that the Pope referring to in-utero testing and continued by quoting the Pope's words: "Is it really possible to oppose the destruction of the environment when while allowing, in the name of comfort and convenience, the slaughter of the unborn…and the carrying out, in the name of progress, of unacceptable interventions and forms of experimentations at the very beginning of human life?" (p.A5). In less intense language, but also anti-termination, Harmon (2005) reports in her article, "The Problem with an Almost-Perfect Genetic World," is that some disability advocates believe that termination of fetuses with disabilities will make it harder for children and adults who do have disabilities: "'We are trying to make a place for ourselves in society at a time when science is trying to remove at least some of us,' said Andrew Imparto, president of the American Association of People with Disabilities" (Section 4, p. 1).
The fourth category, "termination as positive or useful" contained only 8 (8%) stories. These results are interesting because they demonstrate the variety of approaches that newspaper stories can take in reporting disability, yet even more interesting, is the way in which the approaches are fairly consistent within each article. Brody (2005) tells the story of Angela, who, based on prenatal testing, was able to terminate her first pregnancy: the fetus had Down syndrome, and was able to get pregnant again with a "healthy boy." Brody later claims that early testing allows women to terminate "an affected pregnancy before other people know the woman is pregnant." Together, these comments, in the context of the story about testing advances frame termination as a positive option for women carrying a child with a detectable genetic anomaly.
Relationship between Disability and Testing and Termination Frames
Data for the final research questions, "Is there a relationship between the disability and prenatal testing frames?" and "Is there a relationship between the disability and termination frames" indicated that there is a relationship between the varying frames. Using the nonparametric statistic Cramer's V, used for nominal by nominal data, there is a strong, significant relationship (V=.378, p < .000) between the disability and testing frames. For instance, in stories that have a "fear frame" 26 of the articles recommend testing, 13 are neutral and only 3 focus on avoiding testing. In contrast, for the disability as joy frame, only 1 article supports testing, while 7 discuss avoiding it and 4 are neutral on the topic.
In addition to these relationships, there is also a consistent, very strong statistically significant relationship between the disability frame and the article's approach to termination (V=.443, p<.000). Specifically, cross-tab analyses demonstrate that in the fear frame, 18 of the articles discuss termination as matter of fact, 5 as controversial, 5 as encouraging of termination, and none indicate that it should be avoided.
In the disability as natural and disability as joy frames, the largest category is that termination should be avoided (15 and 11, respectively), followed by controversial (5 and 2) and none of the stories with these two frames discuss termination as something which should be encouraged.
In an interesting contrast, in the medical/technical frame, none of the stories discuss termination as something that should be avoided, though 5 mention it is controversial, 18 mention it as matter of fact, and 2 were coded in the encouraging termination category.
Though research has focused on representations of genetic testing in news, there is very little investigation of prenatal testing in news stories. Yet, these results indicate that the media are sending messages about prenatal testing that need to be interrogated. First, it must be noted that the authors were surprised at how little actually was published on prenatal testing. Prenatal testing, ranging from sonograms to amniocentesis, is a billion dollar industry. Moreover, nearly every pregnant woman is affected by some form of prenatal testing, from an alpha-fetal protein test, to a routine ultrasound, yet given the prevalence of the activities, the media has been remarkably silent about this rising practice of routine testing. In fact, the silence may, in fact, signal a lack of newsworthiness simply because testing has been seen as routine and noncontroversial by news writers. However, as a moral and ethical concern, this issue is not trivial and though termination of a typically developing fetus is typically regarded as a "hot button" issue, in most of the coverage studied, termination of a fetus with a disability is presented as normative. This discrepancy deserves further attention.
Regarding the specific data that were collected and analyzed, RQ1 findings demonstrated that over 50% of the stories on prenatal testing did, in fact, support prenatal testing for disabilities, and an additional 20% discussed testing in a neutral way. Overwhelmingly, then, the message is that testing is a good thing, or at least not negative process, for women and their unborn children. Two percent of the articles did indicate that testing was a controversial, and 20% were anti-testing, yet letters to the editor and feature stories largely populated the latter category. In the news and health sections, the primary message is that testing is normal and good.
In relation to some prenatal testing, such as amniocentesis, there is a slight risk to the fetus. In approximately 3 out of 100 cases, the pregnancy is spontaneously terminated after a procedure. In the articles that did mention this side-effect, it was generally stated in the following manner: "amniocentesis may result in the loss of a normal, healthy fetus." Inherent in these stories was the notion that losing a child with a disability was acceptable, but losing a "normal" child was a risk parents needed to consider.
So, what are the tests for, as asked in RQ2? It is clear from these stories that Down syndrome, a triplication of the 21st chromosome, is the primary focus of prenatal testing stories. Though other disabilities are noted, most tests are designed to test for Down syndrome, and it is the most common congenital abnormality. Further, as mentioned earlier, a triplication of the 21st chromosome happens at conception, in most cases. In many other prenatal conditions, parents can often be tested as carriers long before they choose to become parents. For many, though, this may appear as if Down syndrome is unfairly targeted as a focus for testing stories.
For the third research question, data indicate that disability as a tragedy, or disability as a medical focus, were most common in newspaper coverage. Stories typically referred to the "tragedy" or "problems" of disability, as well as "victims and sufferers" of disability. In these stories, only an "outsider's view" of disability was represented, rather than the view of individuals with diagnosis discussed, or parents of children with the particular disability. This can be problematic because, while newspapers are expected to present information in an unbiased way, the assumption is that disability is "bad," and "scary," and it is clearly communicated in one-quarter of the disability and testing stories. The underlying cultural assumptions about disability itself must be examined when presenting disability in a balanced way, particularly when it might involve the end of a pregnancy.
Though the "medical/technical" frame might be seen as "better," scholars must remember that the medical community, itself, speaks in a language of disability as deviant or problematic. Thus, though articles were coded as medical if they refrained from making overt judgments, there were embedded assumptions in the technical language, such as "risk of having a child with a disability." Risk, itself, is a negative term: we speak of risk of bad things, not good. Similarly, terms such as "mental retardation" have negative connotations for most Americans, versus "cognitive disability," the term preferred by the Special Olympics and other activist groups. And, again, the medical voice is privileged over the voice of people and families living with the disability. So, what may appear as "unbiased" since it is "medical" may still fail to present a well-rounded picture of disability.
The disability as "joy" and "natural" frame were far fewer in newspaper coverage, and most often seen in letters to the editor and feature stories. Generally, parents who had children with disabilities, particularly Down syndrome, were writing to express how wonderful their child was, and how valuable their child's life was, in protest of a decidedly negative story. In the medical stories, this perspective was rarely presented as an offset to the technical information. Using them together might help parents dealing with a prenatal diagnosis seek information beyond the doctor's office and expand their perspective and information seeking as they make their choice to continue or terminate a pregnancy.
The final research question demonstrated that while testing is widely recommended, and disability frames are predominantly negative, termination frames are a bit more varied. Termination is a very controversial issue in our country and the mere word "abortion" can often strike up heated arguments. Twenty-five percent of the articles did indicate that termination of a fetus with a disability is controversial, and 30% represented strong feelings against termination.
This study sought to determine how issues of prenatal testing for disabilities were reported in the newspapers in the United States. Overall, it appears disability is being portrayed as a negative quality for a fetus, for which prenatal testing might be helpful. In fact, in many cases, termination of a fetus with a disability was presented as a matter of fact issue, with little regard to the controversy that might be embedded in such a position. Though other perspectives appear in feature stories and some hard news stories, such as disability as joy and disability as normal, the primary message is that disability is problematic, testing can determine which pregnancies might be affected, and ultimately, there is an option to terminate that pregnancy. Given the predominance of the testing message carried in the media, it is important to consider Asch's (1999) claim:
When physicians, public health experts, and bioethicists promote prenatal diagnosis to prevent future disability, they let disability become the only relevant characteristic and suggest that it is such a problematic characteristic that people eagerly awaiting a new baby should terminate the pregnancy and "try again" for a healthy child. Professionals fail to recognize that along with whatever impairment may be diagnosed come all the characteristics of any other future child. The health professions suggest that once a prospective parent knows of the likely disability of a future child, there is nothing else to know or imagine about who the child might become: disability subverts parental dreams" (p. 1652).
Thus, by suggesting testing and offering termination as an option, Asch asserts that the unborn fetus with a disability is already being discriminated against and treated as defective. Therefore, as journalists write their stories, they are representing a particular point of view that may contribute to readers' beliefs about the value of those with disabilities.
Though journalists might strive, even claim, to be unbiased, as pointed out by M. Durham (1998) the entire epistemology of 'objectivity' in journalism has fallen from grace" (p. 117). In fact, as Chomsky (1989) observes, "The very structure of the media is designed to induce conformity to established doctrine" (p. 10). In other words, journalists may not only demonstrate or reflect biases, these biases can be perpetuated in a social system designed to uphold the status quo. Similarly, in the case of disability, the overall social view is that people with disabilities are at a disadvantage in life, and in fact, those with disabilities face multiple stigmas and barriers in their social interactions with people without disabilities.
A more critical view about the media's role in the presentation of disability would be that the media is not just reflecting social biases, but also agents of a group that benefit from the isolation or elimination of people with disabilities. In fact, Chomsky (1998) stated that "the media serve the interests of state and corporate power, which are closely interlinked, framing their reporting and analysis in a manner supportive of established privilege and limiting debate and discussion accordingly" (p. 10). Given that potential problem, M. Durham (1998) argues that journalists need to begin to seriously question their own assumptions and contemplate their role in framing non-dominate group members, including those with "physical and mental disability," because their reporting can "shape the 'facts' set forth in news stories" (p. 138).
Given that issues of pregnancy and disability are highly emotional issues for expectant parents, it is important to examine this important source of information —newspapers — that can be used to help influence perceptions of their medical options. Although this study does not provide a rationale for how or why prenatal testing has been widely accepted and normalized, it does begin to illuminate the messages themselves, which is an important step in examining the role of the media in reflecting and shaping views of prenatal testing for disability and encouraging providers to consider how patients' views may have been formed.
- Asch A. Prenatal diagnosis and selective abortion: a challenge to practice and policy. American Journal of Public Health. 1999;89(11):1649-1657
- Bauer, P. (2007, January 14) What's Lost in Prenatal Testing? Why Encourage Testing for Down Syndrome? Washington Post, p. B07.
- Brody, J. E. (2005, September 23). For women and babies, another form of protection. The New York Times. Retrieved November 20, 2007 from http://www.nytimes.com.
- Bryant, J., & Thompson,S. (2002). Fundamentals of media effects. New York: McGraw-Hill.
- Bubela, T. M., & Caulfield, T. A. (2004). Do the print media "hype" genetic research? A comparison of newspaper stories and peer-reviewed research papers. Canadian Medical Association Journal, 170(9), 1399-1407.
- Calvin, S. (2007, January 7). OK to test for Down syndrome? It's complex. Prenatal diagnosis is now much easier and safer. But it is a mix of conflicting – and sometimes hidden – agendas. Minneapolis Star-Tribune.
- Chomsky, N. (1989). Necessary illusions: Thought control in democratic societies South End Press.
- Clarke, J. N., & Binns, J. (2006). The portrayal of heart disease in mass print magazines, 1991-2001. Health Communication, 19(1), 39-48. doi:10.1207/s15327027hc1901_5
- Craig, D. A. (2000). Ethical language and themes in news coverage of genetic testing. Journalism and Mass Communication Quarterly, 77(1), 160-174.
- Clarke, J. N., & Binns, J. (2006). The portrayal of heart disease in mass print magazines, 1991-2001. Health Communication, 19(1), 39-48.
- Craig, D. A. (2000). Ethical language and themes in news coverage of genetic testing. Journalism and Mass Communication Quarterly, 71, 160-174.
- Donelle, L., Hoffman-Goetz, L., & Clarke, J. N. (2005). Portrayal of genetic risk for breast cancer in ethnic and non-ethnic newspapers. Women & Health, 40(4), 93-111.
- Dorgan, K. A., Williams, S. L., Parrott, R. L., & Harris, T. M. (2003). Hope and despair in pandora's box: Perceiving reproductive reward and risk of genetics technologies and information. Women's Studies in Communication, 26, 88-118.
- Druckman, J. N. (2001). The implications of framing effects for citizen competence. Political Behavior, 23(3), 225-256.
- Durham, F. D. (2001). Breaching powerful boundaries: A postmodern critique of framing. Framing Public Life: Perspectives on Media and our Understanding of the Social World, , 123.
- Ehrenreich, B. (2004, July 22). Owning up to abortion. The New York Times, Retrieved November 20, 2007 from http://www.nytimes.com.
- Entman, R. M. (1993). Framing: Towards clarification of a fractured paradigm. McQuail's Reader in Mass Communication Theory, 390-397.
- Gitlin, T. (1994). The whole world is watching. Transmission: Toward a Post-Television Culture,13, 91.
- Gitlin, T. (2003). The whole world is watching: Mass media in the making & unmaking of the new left, University of California Press.
- Goffman, E. (1974). Frame analysis: An essay on the organization of experience Harper & Row.
- Gupta, J. A. (2007). Private and public eugenics: Genetic testing and screening in India. Journal of Bioethical Inquiry, 4, 217-228.
- Harmon, A (2005, November 20). The Problem with an Almost-Perfect Genetic World. The New York Times. Retrieved November 20, 2007 from http://www.nytimes.com.
- Harmon, A. (2004, June 20). A new test for fetal defects, agonizing choices. The New York Times. Retrieved November 20, 2007 from http://www.nytimes.com.
- Johnson, L. A. (2003, October 9). Down syndrome detected sooner with new tests. Milwaukee Sentinel. Retrieved November 13, 2007 from http://nl.newsbank.com/nl-search/we/Archives?
- Kehn M & Kroll T. (2011). Reporting trends of spinal cord injury research representation: a media content analysis. Disability and Health Journal, 4(2): 121-128, DOI: 10.1016/j.dhjo.2010.09.001.
- Levine, J. (1999). Risky business-communicating scientific findings to the public. JNCI Monographs, (25), 163-166.
- Liamputtong, P., Halliday, J. L., Warren, R., Watson, L. F., & Bell, R. J. (2003). Why do women decline prenatal screening and diagnosis? Australian women's perspective. Women & Health, 37(2), 89-108.
- Markel, H. (1997). Scientific Advances and Social Risks: Historical Perspectives of Genetic Screening Programs for Sickle Cell Disease, Tay-Sachs Disease, Neural Tube Defects. National Human Genome Research Institute. Retrieved from http://www.genome.gov/10002401.
- Markens, S., Browner, C. H., & Press, N. (1999). Because of the risks': How US pregnant women account for refusing prenatal screening. Social Science & Medicine, 49, 359-369.
- National Down Syndrome Congress (2007). NDSC News Release. http://www.ndsccenter.org/gov/newsline.php.
- Nelson, T. E. (2008). Policy goals, public rhetoric, and political attitudes. The Journal of Politics, 66, 581-605.
- Nelson, T. E., & Willey, E. A. (2001). Issue frames that strike a value balance: A political psychology perspective. Framing Public Life: Perspectives on Media and our Understanding of the Social World, 245–266.
- Neuman, W.L. (2000). Qualitative and quantitative sampling. In Social research methods: Qualitative and quantitative approaches (4th ed.). (pp.195-210). Boston, MA: Allyn and Bacon.
- Nichols, M. (2001, April 27). Myth about Down syndrome should end. Milwaukee Sentinel. Milwaukee Sentinel. Retrieved November 13, 2007 from http://nl.newsbank.com/nl-search/we/Archives?p.
- Parens, E. & Asch, A. (2003). Disability rights critique of prenatal genetic testing: Reflections and recommendations. Developmental Disabilities Research Reviews, (9), 40–47, 2003. DOI: 10.1002/mrdd.10056
- Pasek, B. (1999, June 13). Pope, hurt in fall, decries prenatal tests, euthanasia. Austin American Statesman. 5A.
- Potter, W. J. (2011). Conceptualizing Mass Media Effect. Journal of Communication, 61: 896–915. doi: 10.1111/j.1460-2466.2011.01586.x
- Powers, A., & Andsager, J. (1999). How newspapers framed breast implants in the 1990s. Journalism and Mass Communication Quarterly, 76(3), 551-564.
- Roan, S. (1996, November 1). Blood from mothers used in fetal tests. The Los Angeles Times, p. A9.
- Saltus, R. (1998). Test could offer earlier Down syndrome detection, researcher says. The Boston Globe, p. A8.
- Sanchez, A. (1998, November 30). Supply and demand and laws of nature, Austin American Statesman. p. A5.
- Schulte, B. (1999, October 112). Test screens embryos for sickle cell disease; twin births raise questions of cost, genetics. Houston Chronicle. Retrieved July 8, 2006 from http://www.chron.com/CDA/archives/archive.mpl?id=1999_3138114.
- Singer, E., Van Hoewyk, J., & Antonucci, T. C. (2005). Research note. U.S. attitudes toward genetic testing, 1990-2000. International Journal of Pubic Opinion Research, 17, 113-125.
- Ten Eyck, T. A., Thompson, P. B., & Priest, S. H. (2001). Biotechnology in the United States: Mad or moral science? Biotechnology 1996-2000, 307-318.
- Ten Eyck, T. A., & Williment, M. T. (2003). The national media and things genetic: Coverage in the New York Times (1971-2001) and the Washington Post (1977-2001). Science Communication, 25(2), 129.
- Tuchman, G. (1978). Professionalism as an agent of legitimation. The Journal of Communication, 28(2), 106-113.
- Wade, N. (2005, June 21). RNA comes out of the shadow of its famous cousin. The New York Times, p. F2.
- Walsh-Childers, K. (1994). Newspaper influence on health policy development. Newspaper Research Journal, 15(3), 89-104.
- Winsten, J. (1985). Science and the media: The boundaries of truth. Health Affairs, 4(1), 5-23.
- Zelizer, B. (1993). Has communication explained journalism? The Journal of Communication, 43(4), 80-88.
- Zillmann, D. (1999). Exemplification theory: Judging the whole by some of its parts. Media Psychology, 1(1), 69-94.
Some newspapers, such as Indianapolis Star are not archived on Lexis-Nexis.
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Given that letters to the editor were included if they responded to any of the central issues on disability or prenatal testing, a few of the letters responded to the former issue, but not the latter
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- New York Times
- Los Angeles Times
- Chicago Tribune
- Houston Chronicle
- Philadelphia Examiner
- Arizona Republic (Phoenix)
- Union Tribune (San Diego)
- San Antonio Express News
- Dallas Morning News
- San Jose Mercury News
- Detroit Free Press
- Indianapolis Star
- Florida Times Union (Jacksonville)
- San Francisco Chronicle
- Columbus Dispatch
- American Statesman (Austin)
- Memphis Commercial Appeal
- Baltimore Sun
- Forth Worth Star-Telegram
- Charlotte Observer
- El Paso Times
- Milwaukee Sentinel
- Seattle Post
- Boston Globe
- Denver Post
- Louisville-Jefferson County Courier Journal
- Washington Post
- Nashville Tennessean
- Las Vegas Review Journal
- Portland Oregonian