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.

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?

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.

Manifest Content

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.

Latent Content

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:

1. Disability as a gift, adventure, or joy. These stories would have provided an overall upbeat and positive view about the disability.
2. Disability as natural or normal. Stories in this category would de-emphasize the difference of people with the diagnosis, and focus on the similarities.
3. Disability diagnosis as reason for fear, sorrow, tragedy. In stories with this coding, a disability diagnosis was something negative or to be mourned.
4. 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.
5. 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.

1. 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.
2. 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."
3. 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:

1. 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."
2. 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."
3. 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.
4. 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.

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.

Testing Representation

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.

Termination Representation

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.