Ciencia, Genética, y ¿Desinformación?: A content analysis of genetic testing coverage from US Spanish-language news media.

Genetic testing (GT) has become ubiquitous in the United States, either in clinical or direct-to-consumer markets. White and English-speaking populations have primarily benefited from this new technology, leaving other groups, like Hispanic populations, behind. Explanations for this disparity has cited a lack of awareness and knowledge of genetic testing purposes. Science communication from English-language media play an important role in setting initial attitudes and influencing decision-making for audiences. However, Spanish-language media have virtually no research published on documented potential effects for GT utilization despite the continued growth of Hispanic Spanish-speaking groups in the United States. Thus, this study characterized coverage of GT from two of the most prominent US Spanish-language media outlets, Telemundo and Univision. Over a 12-year time period, we identified 235 written articles of GT, mainly focusing on forensics applications, followed by gossip and health. There were 292 sources referenced across all 235 articles drawing from governmental agencies or officials, other news agencies, and medical institutions or officials. The findings suggest that coverage of GT among Spanish-language news outlets is limited. When Spanish-language news outlets do cover GT, they focus on aspects of intrigue or entertainment more than demystifying and explaining GT. Stories tend to cite other published articles, with author attribution often missing, leading to questions of comfort of Spanish-media to cover these topics. Further, the publishing process may lead to confusion of the purpose of genetic testing for health purposes and may bias Spanish-speaking groups towards genetic testing for health purposes. Thus, reconciliation and education initiatives around genetic testing purposes are needed for Spanish-speaking communities from not only media, but also genetics providers and institutions.

"Where do I go? Who do I go to?": BRCA Previvors, genetic counselors and family planning.

Objective: We sought to understand BRCA previvors' perceptions of communication with genetic counselors and other healthcare providers. Methods: We conducted 16 qualitative interviews and utilized thematic analysis to develop patterns present in the narratives of previvors. Results: Interviews with previvors suggest genetic counselors and other providers often make assumptions about previvors' family planning and treatment needs based on perceived gender, age, and sexual orientation. Conclusion: BRCA patients require individualized attention when planning for their future and making healthcare decisions and we argue that implementing patient-centered care practices into the communication process can provide a higher quality of care. Innovation: This study offers an innovative lens through which scholars and healthcare providers may examine the experiences of BRCA previvors as they seek adequate care. Asking previvors to explain their perceptions of conversations with genetic counselors and healthcare providers offers insight into the communicative process of seeking care rather than the health outcomes of the care itself. Our findings suggest biases among providers related to gender, age, and sexual orientation are concerning elements of family planning communication that potentially interrupt previvors' abilities to express their care needs in a safe environment. We argue for an increased awareness of, and advocacy for, more inclusive conversations regarding treatment and family planning decisions.

Previvorship Posting: Why Breast Cancer Previvors Share Their Stories on Social Media.

Research on previvors, individuals with a genetic predisposition to develop hereditary breast and ovarian cancer but who have not yet been diagnosed with breast or other cancers, examines online information gathering and community support to alleviate uncertainty. However, research exploring online content published by previvors themselves is limited. We examined content published to Instagram and TikTok to explore how breast cancer previvors discussed their lived experience which included, but was not limited to, genetic testing, diagnosis with a BRCA1/2 pathogenic (i.e. risk-increasing) variant, the decision to undergo preventative measures like surgery and/or reconstruction, and how they cope after diagnosis and surgical procedures. In the findings, we explicate how many previvors feel a responsibility to share their authentic experience on social media in order to help others and mitigate their own feelings of uncertainty. This study offers a snapshot of how women are sharing breast cancer previvorship and building social connections with each other online.

Breast Cancer Prevention and Treatment: Misinformation on Pinterest, 2018.

Objectives. To quantify and describe the incidence of misinformation about breast cancer on the social media platform Pinterest, a leading source of women's health (e.g., breast cancer) information.Methods. We performed a hand-coded content analysis on 797 Pinterest posts ("pins") mentioning the terms "breast cancer" or "breast" and "cancer," collected in November 2018.Results. From the original sample of 797, 178 (22.3%) made a factual claim about what social media users could do to prevent or treat breast cancer. Of these, more than half-91 (51.1%)-contained misinformation. Therefore, 11.4% of the sample overall contained misinformation related to breast cancer prevention or treatment.Conclusions. Pinterest is a significant vector of misinformation about breast cancer, especially given the platform's overwhelmingly female composition and its visual means of conveying information.Public Health Implications. Health practitioners should be aware of the myths circulating about breast cancer prevention and treatment and be prepared both to dismantle misinformation and to stress reliable health guidance. Meanwhile, Pinterest may wish to widen the criteria it uses for identifying health misinformation on its platform.

Family Sense-Making After a Down Syndrome Diagnosis.

The script of parenting shifts when parents learn of their child's Down syndrome diagnosis. To build a theory of the diagnostic experience and early family sense-making process, we interviewed 33 parents and nine grandparents living in the United States who learned prenatally or neonatally of their child's diagnosis. The core category of rescuing hope for the future encompassed the social process of sense-making over time as parents managed their sorrow, shock, and grief and amassed meaningful messages that anchored them as they looked toward the future. Application of the theory to practice underscores the import of early professional support offered to parents at key points in the sense-making process: Early as they disclose the news of the diagnosis to family and friends, and later close friends and kin assimilate meaningful messages about what the diagnosis means as they recalibrate expectations for a hopeful future.

Addressing anemia among women in India-an informed intervention using Facebook Ad Manager.

BACKGROUND: Women in India continue to have high rates of anemia, especially in critical periods of adolescence and pregnancy. Anemia persists despite decades of government programs aimed at combatting anemia, including through the provision of iron folic acid tablets (IFA). With growing access to mobile phones and social media, even among women, mobile interventions hold potential for influencing knowledge and behaviors. Social media consumption, including on Facebook, is high in India. However, little research has explored if women can be reached with health messages using social media, if data can be collected through this mechanism, and if interventions using social media impact knowledge and behaviors surrounding important health issues such as anemia. The aims of this study were to test an advertising campaign on Facebook about anemia and IFA to women, collect data through social media, and measure its impact. METHODS: A baseline survey and two follow-up surveys were sent to women via Facebook in 2019 in two states of India: Madhya Pradesh and Uttar Pradesh. Between each round of data collection, a set of advertisements based on gaps in knowledge and practices identified in the baseline on anemia and IFA were delivered to more than 3 million women on Facebook. Using this data, we analyze current knowledge and behaviors around anemia and IFA and look at differences by socio-demographics including age, marital status, and pregnancy. Using logistic regression models, we then look for evidence of a significant change in knowledge and behaviors between rounds of data collection. RESULTS: We find that while general knowledge about anemia was high, especially related to its importance in pregnancy, misperceptions persist, such as that it makes babies large and delivery difficult. Only about 15% of the population was currently taking IFA, although nearly 50% noted that they had at some point. Younger women had lower levels of knowledge and practices. Findings about the impact of the Ad campaigns were mixed, with some indicators changing in positive and some in negative directions and no clear trend between surveys. Two indicators that were of high focus in the Ad campaigns changed in the desired direction after both ad campaigns (iron can make labor/delivery difficult and iron supplements are only for women who have anemia). CONCLUSIONS: Overall, this study shows that a social media campaign about anemia has the potential to reach a large number of women in India, including young women, who are hard to reach if they are not in school or currently pregnant and seeing a physician. This study shows that it is possible to collect data from women through social media and measure the impact of an intervention. More research is needed to know if social media is an effective approach to actually change attitudes and behaviors related to anemia, or other important health concerns.

Facebook Powered Measurement and Evaluation for Iron Folic Acid Health Intervention in India.

As the media landscape changes and billions of people around the world turn to Facebook, Instagram, WhatsApp, and other social media platforms for information and social interactions, the need to develop effective methods of leveraging social media for social behavior change communication (SBCC) becomes increasingly important. Yet, in order for the public health sector to embrace social media for SBCC, we must have methods for measuring the impact of social media-based SBCC. In this letter, we share a new approach for measurement and evaluation of social media-based SBCC campaigns. The approach was developed as part of an iron-folic acid health intervention targeting young women in two states in northern India; Uttar Pradesh and Maydar Pradesh.

Enemies and friends in high-tech places: the development and validation of the Online Social Experiences Measure.

BACKGROUND: Interpersonal positivity and negativity are separable dimensions both recognized as having important effects on health. Though online social interactions and research examining them are increasingly common, no validated instrument has heretofore been developed to examine social support and social negativity specifically in online contexts. The present studies describe the development and validation of the Online Social Experiences Measure (OSEM) to allow for assessment of online social positivity and negativity simultaneously. METHODS AND RESULTS: In Study I, responses to a potential item pool were collected from participants (N = 557), who were then subdivided into two groups for the purposes of cross-validation via exploratory and confirmatory factor analyses. Results suggested the emergence of two factors: online social support (OSEM+ subscale) and online social negativity (OSEM- subscale). Across Studies I and II (N = 139), the OSEM showed good convergent and discriminant validity, and both subscales had high internal consistency. Study II included an ambulatory cardiovascular assessment and found the OSEM- subscale to be predictive of elevated diastolic blood pressure and heart rate. The OSEM+ subscale was predictive of more favorable cardiovascular readings for some types of participants (e.g. those with a greater number of online-only social ties). CONCLUSIONS: Overall, results suggest online social positivity and negativity may have implications for physical health, and that the OSEM may be a useful tool in understanding online social processes.

Structurating Expanded Genetic Carrier Screening: A Longitudinal Analysis of Online News Coverage.

Expanded carrier screening (ECS) is a genetic test that is designed to assess the risk of a healthy person passing down a genetic disorder, such as spinal muscular atrophy, to future children. ECS screens for up to several hundred disorders in one test, expanding on traditional carrier screening tests that target one or a few genetic disorders. However, little is known about how this health technology is being presented to the public in media coverage. Accordingly, this study is a qualitative content analysis of online news and information of ECS over a 6-year period, beginning in 2010 when the technology was publicly available. Results indicate that major coverage themes were consistent across the years included, although content within those themes changed over time. Using structuration theory to guide analysis, results reveal that online news and information from 2010 to 2015 structurated ECS as a health technology innovation, an opportunity for business and investment, and a tool for family planning. Results are discussed in terms of implications for future research, for health journalism practice, and for clinical interactions.

Adolescent and Young Adult Cancer Survivors' Perspectives on Their Internet Use for Seeking Information on Healthy Eating and Exercise.

PURPOSE: To explore adolescent and young adult (AYA) cancer survivors' internet use in seeking healthy lifestyle behavior (HLB) information on diet and exercise. METHODS: Twenty-five AYA cancer survivors participated in focus groups or interviews. Data were analyzed using qualitative content analysis. RESULTS: Most survivors (92%) sought HLB information from internet sources. Key issues included the following: (1) too much information available, (2) information not meeting survivors' unique needs, and (3) concerns about trustworthiness of information. CONCLUSION: Although AYA cancer survivors use the internet to seek HLB information, internet resources could be modified to better meet the needs of AYA cancer survivors.

Business and Breakthrough: Framing (Expanded) Genetic Carrier Screening for the Public.

A growing body of research has given attention to issues surrounding genetic testing, including expanded carrier screening (ECS), an elective medical test that allows planning or expecting parents to consider the potential occurrence of genetic diseases and disorders in their children. These studies have noted the role of the mass media in driving public perceptions about such testing, giving particular attention to ways in which coverage of genetics and genetic testing broadly may drive public attitudes and choices concerning the morality, legality, ethics, and parental well-being involved in genetic technologies. However, few studies have explored how mass media are covering the newer test, ECS. Drawing on health-related framing studies that have shown in varying degrees the impact particular frames such as gain/loss and thematic/episodic can have on the public, this study examines the frame selection employed by online media in its coverage of ECS. This analysis-combined with an analysis of the sources and topics used in such coverage and how they relate to selected frames-helps to clarify how mass media are covering an increasingly important medical test and offers considerations of how such coverage may inform mass media scholarship as well as health-related practices.

Long-term health effects among testicular cancer survivors.

PURPOSE: Testicular cancer is diagnosed at a young age and survival rates are high; thus, the long-term effects of cancer treatment need to be assessed. Our objectives are to estimate the incidence rates and determinants of late effects in testicular cancer survivors. METHODS: We conducted a population-based cohort study of testicular cancer survivors, diagnosed 1991-2007, followed up for a median of 10 years. We identified 785 testicular cancer patients who survived ≥5 years and 3323 men free of cancer for the comparison group. Multivariate Cox regression analysis was used to compare the hazard ratio between the cases and the comparison group and for internal analysis among case patients. RESULTS: Testicular cancer survivors experienced a 24 % increase in risk of long-term health effects >5 years after diagnosis. The overall incidence rate of late effects among testicular cancer survivors was 66.3 per 1000 person years. Higher risks were observed among testicular cancer survivors for hypercholesterolemia, infertility, and orchitis. Chemotherapy and retroperitoneal lymph node dissection appeared to increase the risk of late effects. Being obese prior to cancer diagnosis appeared to be the strongest factor associated with late effects. CONCLUSIONS: Testicular cancer survivors were more likely to develop chronic health conditions when compared to cancer-free men. IMPLICATIONS FOR CANCER SURVIVORS: While the late effects risk was increased among testicular cancer survivors, the incidence rates of late effects after cancer diagnosis was fairly low.

Colorectal cancer prevention and intentions to use low-dose aspirin: A survey of 1000 U.S. adults aged 40-65.

OBJECTIVE: The Translating Research into Action (TRIA) study was initiated to gather dissemination information on emerging cancer control recommendations. Daily, low-dose aspirin has been identified as a promising means of preventing colorectal cancer, and stakeholders are already calling for research to facilitate dissemination. Thus, the current study sought to identify factors related to intention to use aspirin for colorectal cancer prevention. METHODS: In April 2014, U.S. adults aged 40-65 (N=1000) were recruited to participate in a survey grounded in the health belief model. RESULTS: Older, Black males were more likely to intend to use low-dose aspirin to prevent colorectal cancer. Smokers, and those with a history of polyps, were also more receptive to initiating daily, low-dose aspirin use. Five psychosocial factors were related to intention including self-efficacy, response efficacy, perceived barriers, perceived susceptibility to colorectal cancer, and cancer information overload. CONCLUSION: Initial campaigns/interventions designed to increase daily, low-dose aspirin for colorectal cancer prevention may be more effective if they target receptive populations (older, Black males) using messages informed by the health belief model.

#Stupidcancer: Exploring a Typology of Social Support and the Role of Emotional Expression in a Social Media Community.

Social network sites (SNSs) like Twitter continue to attract users, many of whom turn to these spaces for social support for serious illnesses like cancer. Building on literature that explored the functionality of online spaces for health-related social support, we propose a typology that situates this type of support in an SNS-based open cancer community based on the type (informational or emotional) and the direction (expression or reception) of support. A content analysis applied the typology to a 2-year span of Twitter messages using the popular hashtag "#stupidcancer." Given that emotions form the basis for much of human communication and behavior, including aspects of social support, this content analysis also examined the relationship between emotional expression and online social support in tweets about cancer. Furthermore, this study looked at the various ways in which Twitter allows for message sharing across a user's entire network (not just among the cancer community). This work thus begins to lay the conceptual and empirical groundwork for future research testing the effects of various types of social support in open, interactive online cancer communities.

Barriers and Facilitators of Healthy Diet and Exercise Among Adolescent and Young Adult Cancer Survivors: Implications for Behavioral Interventions.

PURPOSE: This study uses qualitative methods to identify barriers to and facilitators of exercise and healthy eating among adolescent and young adult (AYA) cancer survivors (survivors currently aged 18-39 years and diagnosed with cancer anytime in their lives), as reported by survivors and their primary supporters. METHODS: Survivors (M(age) = 27.6 years, SD = 6.6 years) had completed active cancer therapy. Survivors and supporters (i.e., nominated by survivors as someone who was a main source of support) attended separate focus group sessions (five survivor focus groups, five supporter focus groups) and were asked to complete a self-reported questionnaire assessing demographic and cancer history and engagement in exercise and healthy eating. RESULTS: In total, 25 survivors and 19 supporters participated. The three overarching themes identified were barriers to exercise and healthy eating (e.g., lack of resources, negative thoughts and feelings, negative social and environmental influences), facilitators of exercise and healthy eating (e.g., cognitive motivators, tools for health behavior implementation, social relationships), and intervention implications (e.g., informational needs, desire for social support). CONCLUSION: AYA cancer survivors and their supporters identified barriers to and facilitators of healthy lifestyle behaviors, which should be considered when designing interventions to improve the long-term health of survivors.

The Influence of Weight-of-Evidence Messages on (Vaccine) Attitudes: A Sequential Mediation Model.

Media coverage of contentious risk issues often features competing claims about whether a risk exists and what scientific evidence shows, and journalists often cover these issues by presenting both sides. However, for topics defined by scientific agreement, balanced coverage erroneously heightens uncertainty about scientific information and the issue itself. In this article, we extend research on combating so-called information and issue uncertainty using weight of evidence, drawing on the discredited autism-vaccine link as a case study. We examine whether people's perceptions of issue uncertainty (about whether a link exists) change before and after they encounter a news message with weight-of-evidence information. We also explore whether message exposure is associated with broader issue judgments, specifically vaccine attitudes. Participants (n = 181) read news articles that included or omitted weight-of-evidence content stating that scientific studies have found no link and that scientists agree that none exists. Postexposure issue uncertainty decreased-in other words, issue certainty increased-from preexposure levels across all conditions. Moreover, weight-of-evidence messages were associated with positive vaccine attitudes indirectly via reduced information uncertainty (i.e., one's belief that scientific opinion and evidence concerning a potential link is unclear) as well as issue uncertainty. We discuss implications for risk communication.

Including "evidentiary balance" in news media coverage of vaccine risk.

Journalists communicating risk-related uncertainty must accurately convey scientific evidence supporting particular conclusions. Scholars have explored how "balanced" coverage of opposing risk claims shapes uncertainty judgments. In situations where a preponderance of evidence points to a particular conclusion, balanced coverage reduces confidence in such a consensus and heightens uncertainty about whether a risk exists. Using the autism-vaccine controversy as a case study, we describe how journalists can cover multiple sides of an issue and provide insight into where the strength of evidence lies by focusing on "evidentiary balance." Our results suggest that evidentiary balance shapes perceived certainty that vaccines are safe, effective, and not linked to autism through the mediating role of a perception that scientists are divided about whether a link exists. Deference toward science, moreover, moderates these relationships under certain conditions. We discuss implications for journalism practice and risk communication.

Commenting on health: a framing analysis of user comments in response to health articles online.

Public health officials have continually urged journalists and other members of the news media to ease off health frames that focus on individuals and to instead promote broader societal frames. Although some scholarly research has reinforced these pleas, none has examined the interplay between frames of health news coverage and resulting public comments. The current online environment invites such an analysis, allowing news organizations to post articles online and the public to comment on those articles. Using a content analysis, this study reveals thematic frames in online health stories may drive down gain-oriented responses, while episodic frames may prompt the public to share more personal comments. Furthermore, the findings examine other textual factors--gain and loss frames and mobilizing information--that may be driving the volume and frames of user comments to health stories online.

Twitter as a source of vaccination information: content drivers and what they are saying.

Twitter is a popular source of health information. This study reports a content analysis of posts about vaccinations, documenting sources, tone, and medical accuracy. Results can help explain patient knowledge and directions for educational campaigns. A set of 6,827 tweets indicates professional sources were shared most and treated positively. Two-thirds of shared medical content were substantiated. One-third of messages were positive, counter to other research and suggesting that users apply critical thinking when evaluating content.