Social Media, Public Health Research, and Vulnerability: Considerations to Advance Ethical Guidelines and Strengthen Future Research.

The purpose of this article is to build upon prior work in social media research and ethics by highlighting an important and as yet underdeveloped research consideration: how should we consider vulnerability when conducting public health research in the social media environment? The use of social media in public health, both platforms and their data, has advanced the field dramatically over the past 2 decades. Applied public health research in the social media space has led to more robust surveillance tools and analytic strategies, more targeted recruitment activities, and more tailored health education. Ethical guidelines when using social media for public health research must also expand alongside these increasing capabilities and uses. Privacy, consent, and confidentiality have been hallmarks for ethical frameworks both in public health and social media research. To date, public health ethics scholarship has focused largely on practical guidelines and considerations for writing and reviewing social media research protocols. Such ethical guidelines have included collecting public data, reporting anonymized or aggregate results, and obtaining informed consent virtually. Our pursuit of the question related to vulnerability and public health research in the social media environment extends this foundational work in ethical guidelines and seeks to advance research in this field and to provide a solid ethical footing on which future research can thrive.

Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers.

LAY ABSTRACT: A lot of autism research has focused on finding genes that might cause autism. To conduct these genetic studies, researchers have created 'biobanks' - collections of biological samples (such as blood, saliva, urine, stool and hair) and other health information (such as cognitive assessments and medical histories). Our study focused on the Australian Autism Biobank, which collected biological and health information from almost 1000 Australian autistic children and their families. We wanted to know what people thought about giving their information to the Biobank and why they chose to do so. We spoke to 71 people who gave to the Biobank, including 18 autistic adolescents and young adults, 46 of their parents and seven of their siblings. We also spoke to six researchers who worked on the Biobank project. We found that people were interested in giving their information to the Biobank so they could understand why some people were autistic. Some people felt knowing why could help them make choices about having children in the future. People also wanted to be involved in the Biobank because they believed it could be a resource that could help others in the future. They also trusted that scientists would keep their information safe and were keen to know how that information might be used in the future. Our findings show that people have lots of different views about autism biobanks. We suggest researchers should listen to these different views as they develop their work.

"Peas in a pod": Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults.

In this paper, we report on a participatory oral history study documenting the lives of late-diagnosed autistic adults in Australia. We interviewed 26 autistic adults about their life history and the impact of late diagnosis. All were diagnosed after the age of 35, growing up in an era when autism was not well known. Using reflexive thematic analysis, we uncovered a rich body of reflections on shared Autistic identity and identified three major themes within that data set: 'conceptualising the Autistic family', 'creating Autistic community', and 'contesting Autistic identity'. Overall, the study provides insights into the active creation of shared Autistic identity and the importance of Autistic community to these late-diagnosed autistic adults.

"I Knew She'd Get It, and Get Me": Participants' Perspectives of a Participatory Autism Research Project.

Introduction: Autistic advocates and their supporters have long argued that conventional research practices provide too few opportunities for genuine engagement with autistic people, contributing to social disenfranchisement among autistic people. We recently described one attempt to develop and implement a participatory study in which a team of autistic and nonautistic researchers worked together to gather life histories from late-diagnosed autistic people. In the current study, we sought to understand the impact of this participatory approach on the participants themselves. Methods: We spoke to 25 Australian late-diagnosed autistic adults (aged 45-72 years), who had been interviewed by an autistic researcher using an oral history approach. We asked them about their experience of being involved in that project and the research process more broadly. We thematically analyzed participants' interviews. Results: Participants responded overwhelmingly positively to the opportunity to tell their life history, considering it illuminating and empowering. While recounting their life history was often described as "exhausting" and "draining," participants also reported feeling "supported all the way" and agreed "it was made easier because I had an autistic researcher interviewing me." One participant went so far as to say that they "probably would have dropped out [of the project] if it was run by people who weren't autistic." Conclusions: These findings demonstrate that the benefits of coproduction to researchers and community partners extend to study participants and to the quality of the research itself. Involving autistic partners in the research process, especially in its implementation, can play a crucial role in enhancing autism research.

Why is this an important issue?: Autistic people are often left out of decisions that affect them, including in research. We wanted to change that. We, a group of autistic and nonautistic researchers, worked together to come up with a research project. In that project, we wanted to know more about autistic people who were diagnosed late in their lives. What was the purpose of this study?: We wanted to know about their experiences of taking part in the research. We also wanted to understand what it was like for our study participants to tell their life story to another autistic person. What did we do?: We spoke to 25 autistic people about their experiences of telling their life history. We asked questions like, "Can you tell me a bit about why you wanted to share your life history?" and "What was your overall experience of taking part in this research project?" We interviewed participants for about 25 minutes. What were the results of the study?: We found that participants felt good about taking part in this project. They felt supported and were pleased that the project was being run by autistic people. They also told us that telling their story was often painful. However, it was made easier because they had an autistic researcher interviewing them. They also felt that they could share more with this person than with someone who was not an autistic person. What do these findings add to what was already known?: This study shows that research that is done together by autistic and nonautistic researchers has a positive effect on participants. What are the potential weaknesses in the study?: Most of our participants were well educated, White, and were in some form of work. We do not know if participants' positive experiences would also happen with other autistic people, including those from different cultural groups. This study was also unusual because it allowed participants to tell their own stories in their own way. That might have made participants more positive about it. How will these findings help autistic adults now or in the future?: These findings show how important it is to include autistic people in research. It makes a real difference to the participants and to the quality of the research.

"If I was to post something, it would be too vulnerable:" University students and mental health disclosures on instagram.

OBJECTIVE: Assess Instagram use for mental health disclosure in university students to assess the potential for Instagram use as mental health support-seeking. PARTICIPANTS: Twenty-one students using mental health services while attending a private, Mid-Atlantic university between 6/2017-12/2017. METHODS: Collected qualitative interview and Instagram data and analyzed them in parallel. Instagram data supplemented interview themes and were coded and analyzed quantitatively to define features of participants' Instagram use. RESULTS: Participants displayed aversions to posting mental health disclosures on Instagram, citing public and self-stigma as barriers to disclosure. Despite this, participants reported instances in which their Instagram posts directly or indirectly reflected their lived experiences. Some also maintained second anonymous accounts for fuller disclosure. CONCLUSIONS: Given the benefits of mental health disclosures to well-being and the predilection for social media use in university students, student and university-led initiatives to promote social media environments conducive to disclosures could have widespread mental health benefits.

'A way to be me': Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood.

LAY ABSTRACT: Using oral history methods, we interviewed and recorded 26 autistic adults in Australia about their life history. We wanted to better understand interviewees' self-reflections about their lives. The interviewers were autistic researchers and the interviews were analysed by autistic and non-autistic researchers. All of the adults we interviewed were born before 1975 and formally identified as autistic after age 35 years. This group of people is sometimes referred to as 'late-diagnosed autistic adults'. In general, there is not much research done about autistic adults and even less is known about those diagnosed late in life. In this article, we explore what these adults said about their sense of self and how that changed over time. These autistic adults told us about many negative experiences, including trauma, which had shaped how they think about themselves. For most, autism diagnosis had a very positive impact on their sense of self, allowing them to understand more about their own past and to feel good about their autistic identity. Previously some researchers have said that autistic people have a limited or impaired sense of self. Instead, our results show some autistic people can actually reflect deeply on their lives and their changing sense of self-identity over time.

Office of Management and Budget Racial/Ethnic Categories in Mortality Research: A Framework for Including the Voices of Racialized Communities.

Since its founding, the US government has sorted people into racial/ethnic categories for the purpose of allowing or disallowing their access to social services and protections. The current Office of Management and Budget racial/ethnic categories originated in a dominant racial narrative that assumed a binary biological difference between Whites and non-Whites, with a hard-edged separation between them. There is debate about their continued use in researching group differences in mortality profiles and health outcomes: should we use them with modifications, cease using them entirely, or develop a new epistemology of human similarities and differences? This essay offers a research framework for including in these debates the daily lived experiences of the 110 million racialized non-White Americans whose lived experiences are the legacy of historically limited access to society's services and protections. The experience of Latinos in California is used to illustrate the major elements of this framework that may have an effect on mortality and health outcomes: a subaltern fuzzy-edged multivalent racial narrative, agency, voice, and community and cultural resilience.

Roundup negatively impacts the behavior and nerve function of the Madagascar hissing cockroach (Gromphadorhina portentosa).

Glyphosate is the active ingredient in Roundup formulations. Glyphosate-based herbicides are used globally in agriculture, forestry, horticulture, and in urban settings. Glyphosate can persist for years in our soil, potentially impacting the soil-dwelling arthropods that are primary drivers of a suite of ecosystem services. Furthermore, although glyphosate is not generally classified as neurotoxic to insects, evidence suggests that it may cause nerve damage in other organisms. In a series of experiments, we used food to deliver environmentally realistic amounts of Roundup ready-to-use III, a common 2% glyphosate-based herbicide formulation that lists isopropylamine salt as its active ingredient, to Madagascar hissing cockroaches. We then assessed the impact of contamination on body mass, nerve health, and behavior. Contaminated food contained both 30.6 mg glyphosate and so-called inert ingredients. Food was refreshed weekly for 26-60 days, depending on the experiment. We found that consumption of contaminated food did not impact adult and juvenile survivorship or body weight. However, consumption of contaminated food decreased ventral nerve cord action-potential velocity by 32%, caused a 29% increase in respiration rate, and caused a 74.4% decrease in time spent on a motorized exercise wheel. Such changes in behavior may make cockroaches less capable of fulfilling their ecological service, such as pollinating or decomposing litter. Furthermore, their lack of coordination may make them more susceptible to predation, putting their population at risk. Given the decline of terrestrial insect abundance, understanding common risks to terrestrial insect populations has never been more critical. Results from our experiments add to the growing body of literature suggesting that this popular herbicide can act as a neurotoxin.

Documenting the untold histories of late-diagnosed autistic adults: a qualitative study protocol using oral history methodology.

INTRODUCTION: Receiving a diagnosis of autism in adulthood is increasingly common for a subset of individuals who were either misdiagnosed in childhood or missed out on a diagnosis altogether. This qualitative study, coproduced with autistic people, invites late-diagnosed autistic adults to share their life histories to (1) understand better the consequences of living without a diagnosis, (2) elucidate what precipitates an autism diagnosis in mid-to-late adulthood and (3) identify the perceived impact of receiving that diagnosis. METHODS AND ANALYSIS: Oral histories have been a successful way to uncover overlooked and marginalised voices. We therefore adopt qualitative, oral history methodology in this study to understand these adults' experiences, especially of living in an era when autism was not well known. We will recruit 24 participants who will (1) have been born before 1975, (2) have received a clinical, autism diagnosis after the age of 35, (3) be English-speaking and (4) have spent most of their childhood and adulthood living in Australia. Participants will take part in four sessions, including the main, qualitative, oral history interview, through a range of possible formats to facilitate inclusion. The interview data will be analysed using reflexive thematic analysis. ETHICS AND DISSEMINATION: The protocol has received institutional research ethics approval from Macquarie University's Human Research Ethics Committee (Ref.: 52019556310562). This study will yield understanding of the life experiences of autistic adults, especially middle-aged and older Australians, should inform more effective diagnostic practices and provide insight into the key factors that might promote resilience and enhance quality of life in autistic people. The findings will be disseminated to academic and clinical audiences through journal articles and conference presentations and to the autistic and autism communities through accessible reports. The interviews will also be prepared for digital archiving, which will enable ongoing access for future generations and communities.

Clinical Genetics Lacks Standard Definitions and Protocols for the Collection and Use of Diversity Measures.

Genetics researchers and clinical professionals rely on diversity measures such as race, ethnicity, and ancestry (REA) to stratify study participants and patients for a variety of applications in research and precision medicine. However, there are no comprehensive, widely accepted standards or guidelines for collecting and using such data in clinical genetics practice. Two NIH-funded research consortia, the Clinical Genome Resource (ClinGen) and Clinical Sequencing Evidence-generating Research (CSER), have partnered to address this issue and report how REA are currently collected, conceptualized, and used. Surveying clinical genetics professionals and researchers (n = 448), we found heterogeneity in the way REA are perceived, defined, and measured, with variation in the perceived importance of REA in both clinical and research settings. The majority of respondents (>55%) felt that REA are at least somewhat important for clinical variant interpretation, ordering genetic tests, and communicating results to patients. However, there was no consensus on the relevance of REA, including how each of these measures should be used in different scenarios and what information they can convey in the context of human genetics. A lack of common definitions and applications of REA across the precision medicine pipeline may contribute to inconsistencies in data collection, missing or inaccurate classifications, and misleading or inconclusive results. Thus, our findings support the need for standardization and harmonization of REA data collection and use in clinical genetics and precision health research.

Population-Based Approaches to Mental Health: History, Strategies, and Evidence.

There is growing recognition in the fields of public health and mental health services research that the provision of clinical services to individuals is not a viable approach to meeting the mental health needs of a population. Despite enthusiasm for the notion of population-based approaches to mental health, concrete guidance about what such approaches entail is lacking, and evidence of their effectiveness has not been integrated. Drawing from research and scholarship across multiple disciplines, this review provides a concrete definition of population-based approaches to mental health, situates these approaches within their historical context in the United States, and summarizes the nature of these approaches and their evidence. These approaches span three domains: (a) social, economic, and environmental policy interventions that can be implemented by legislators and public agency directors, (b) public health practice interventions that can be implemented by public health department officials, and (c) health care system interventions that can be implemented by hospital and health care system leaders.

Barriers and facilitators to mammography among women with intellectual disabilities: a qualitative approach.

Although women with intellectual disabilities have the same breast cancer incidence rate as women without intellectual disabilities, they have fewer mammograms and higher mortality rates. Qualitative inquiry was employed to explore barriers and facilitators to mammography among this population. In-depth qualitative interviews were conducted with 30 women with intellectual disabilities and their caregivers in Philadelphia during 2015-2016. Thematic analysis was conducted using inductive and deductive coding. While results provide further evidence for prior research on barriers to mammography among women with intellectual disabilities (e.g. being unprepared, fear of the exam), this study generated novel barriers such as lack of breast ultrasound awareness, sedation failing to work, and lack of mammogram education in adult day programs, and novel facilitators such as extended family support and positive attitudes. Results support the need to address barriers and promote facilitators to improve the breast cancer screening experience among women with intellectual disabilities.

Glyphosate but not Roundup® harms earthworms (Eisenia fetida).

Glyphosate is the active ingredient in Roundup® formulations. While multiple studies have documented the toxicity, environmental persistence, and tendency to spread for glyphosate and Roundup®, few studies have compared the toxicity of glyphosate-based formulations to the toxicity of pure glyphosate for soil invertebrates, which contact both the herbicide and the formulations. Hundreds of formulations exist; their inert ingredients are confidential; and glyphosate persists in our food, water, and soil. In this experiment, we held glyphosate type and concentration constant, varying only formulation. Using Roundup Ready-to-Use III®, Roundup Super Concentrate®, and pure glyphosate, we delivered 26.3 mg glyphosate in the form of isopropylamine salt per kg of soil to compost worms (Eisenia fetida). We found that worms living in soil spiked with pure glyphosate lost 14.8-25.9% of their biomass and survived a stress test for 22.2-33.3% less time than worms living in uncontaminated soil. Worms living in soil spiked with Roundup Ready-to-Use III® and Roundup Super Concentrate® did not lose body mass and survived the stress test as well as worms living in uncontaminated soil. No contaminant affected soil microbial or fungal biomass over the 40-day period of this experiment. We suggest that the nitrates and phosphates in the formulations offset the toxic effects of glyphosate by spurring microbial growth and speeding glyphosate degradation. We also found a 26.5-41.3% reduction in fungal biomass across all treatments over the course of this experiment, suggesting that the worms consumed fungi and spores.

Mental illness and bipolar disorder on Twitter: implications for stigma and social support.

Background: Mental illness (MI), and particularly, bipolar disorder (BD), are highly stigmatized. However, it is unknown if this stigma is also represented on social media.Aims: Characterize Twitter-based stigma and social support messaging ("tweets") about mental health/illness (MH)/MI and BD and determine which tweets garnered retweets.Methods: We collected tweets about MH/MI and BD during a three-month period and analyzed tweets from dates with the most tweets ("spikes"), an indicator of topic interest. A sample was manually content analyzed, and the remainder were classified using machine learning (logistic regression) by topic, stigma, and social support messaging. We compared stigma and support toward MH/MI versus BD and used logistic regression to quantify tweet features associated with retweets, to assess tweet reach.Results: Of the 1,270,902 tweets analyzed, 94.7% discussed MH/MI and 5.3% discussed BD. Spikes coincided with a celebrity's death and a MH awareness campaign. Although the sample contained more support than stigma messaging, BD tweets contained more stigma and less support than MH/MI tweets. However, stigma messaging was infrequently retweeted, and users often retweeted personal MH experiences.Conclusions: These findings demonstrate opportunities for social media advocacy to reduce stigma and increase displays of social support towards people living with BD.

Racial/Ethnic Disparities in Mammogram Frequency Among Women With Intellectual Disability.

Little information exists on the associations between intellectual disability (ID) and race/ethnicity on mammogram frequency. This study collected survey and medical record data to examine this relationship. Results indicated that Hispanic and Black women with ID were more likely than White women with ID to have mammograms every 2 years. Participants who live in a state-funded residence, were aged 50+, and had a mild or moderate level of ID impairment were more likely to undergo mammography compared to participants living with family or alone, were <50, and had severe ID impairment. Further research is needed to understand the mechanisms explaining disparities in mammograms between these racial/ethnic groups.

Pediatricians' vaccine attitudes and practices before and after a major measles outbreak.

The objective of this study was to describe how a sample of pediatricians were impacted by and responded to the Disneyland measles outbreak in the United States. We conducted three repeated cross-sectional, online surveys in 2014 (before the outbreak), 2015, and 2016 (after the outbreak) among members of three state chapters of the American Academy of Pediatrics. We assessed pediatricians' level of willingness and length of time comfortable delaying the measles-mumps-rubella (MMR) vaccine before and after the outbreak. Frequency of alternative immunization schedule requests and creation of office immunization policies due to the outbreak were measured. The sample included 304 pediatricians in 2014, 270 in 2015, and 221 in 2016. We found no significant changes in willingness or comfort delaying the MMR vaccine before and after the outbreak. In 2015, 38% of pediatricians reported fewer requests for alternative immunization schedules and 20% created stricter office immunization policies. A subsample of pediatricians reported administering the MMR vaccine earlier in the recommended time frame and taking extra precautions in waiting rooms due to the outbreak. Our results suggest that this measles outbreak did not lead to significant changes in attitudes or practices among this sample, but did modestly affect office immunization policies and practices.