Young adults’ considerations for whole genome sequencing

Background: Young adults’ (YAs) attitudes regarding undertaking, receiving and sharing genomic information will inform translation of genomic technologies into improvements in health and healthcare. They have greater exposure than those before them with increasing opportunities to access whole genome sequencing (WGS). As YAs, the potential benefits from WGS, through preventative and therapeutic measures lie ahead. WGS results may offer relevant new information to them and their relatives. By nature of genomic data, the act of sharing WGS results with genomic databases or databanks has the potential to improve societal health. Yet, as a group, their preferences towards undertaking WGS and related individual characteristics are little known, requiring further examination. Theoretical models to support research about attitudes and behaviour have not been appraised to address their suitability for use in the context of WGS. Several established models for technology acceptance and health-related behaviours exist yet their appropriateness to the context of WGS remains untested. Appraisal and considered use of theoretical models for research design and analytical purposes is important to increase rigour of empirical studies. Each model reflects different characteristics, influencing the lines of research enquiry. Advancement of appropriately underpinned research facilitates development of comparable empirical research in particular fields of study, such as genomics. Continued examination of the fit between the phenomenon being explored and the theoretical underpinnings themselves is also necessary. This allows gaps to be recognised between models used and reality, furthering understanding and model development or refinement. This PhD thesis was in partnership with Nottingham University Hospitals NHS Trust. Methods: Studies with YAs were informed by literature that related to their use of WGS and theoretical models that could reflect undertaking WGS. A quantitative survey study was undertaken with 112 YAs to identify relationships between their sharing preferences and their gender, educational attainment, STEMM background and genetic knowledge. A WGS Pathway was proposed to reflect the steps of undertaking WGS, receiving results and sharing them. The Proposed WGS Pathway was used to structure the question order for a semi-structured interview study with 11 YAs. Qualitative data were collected and analysed using theme based content analysis. This method simulated YAs’ references and reasons, captured in the order they might occur if the YAs imagined undertaking WGS. An appraisal of theoretical models was undertaken using data collected in the YAs’ studies to inform their relevance and fit to WGS. A WGS framework, constructed to represent YAs’ consideration factors along the WGS Pathway was evaluated by domain experts, who ranked the WGS framework’s factors by likelihood and importance, and shared their views about the Proposed WGS Pathway. Results: Characteristics such as gender and genetic knowledge were statistically significant in relation to YAs’ willingness to engage with and share information about WGS. Themes from interviews indicated YAs had interests related to health and self-discovery. Health professionals and trusted researchers were seen positively for sharing WGS results information with. Appraisal of theoretical models indicated the Theory of Planned Behaviour (TPB) was best placed to support a WGS framework representing findings from the YA studies. From TPB factors presented to them, the domain experts decided utility-related attitudes and perceived behavioural control (PBC) were more important than subjective norms (SN) and external factors. They also identified differences between what factors they perceived YAs would consider compared to those they thought were actually important. Conclusion: The findings demonstrated the significant impact individual characteristics had on YAs’ attitudes towards undertaking WGS, receiving results and sharing genetic information. Analysis of YAs’ responses illustrated areas for further investigation including expectations of WGS and sharing preferences. Appraisal of theoretical models identified the need for a wide lens to incorporate findings about undertaking WGS. Domain experts pointed to a need for YAs to undertake some form of pre-WGS intervention so they may take a step back to make an informed decision about the undertaking. Implications for Practice: The WGS framework offers a successful translation of WGS into services to improve health outcomes for YAs. A clearer understanding of knowledge and educational needs when choosing to undertake WGS, receive results, and make sharing decisions would better inform individuals. Further exploration of YAs’ sharing preferences and attitudes regarding health professionals would contribute to a better understand of factors affecting communication related to WGS and the resulting information. As genomics permeate more into the realms of the quantified self for self-care and healthcare, views of people who are undertaking, receiving and managing their WGS information needs further exploration so systems and services may be designed to meet their evolving needs

Young adults’ considerations for whole genome sequencing

Background: Young adults’ (YAs) attitudes regarding undertaking, receiving and sharing genomic information will inform translation of genomic technologies into improvements in health and healthcare. They have greater exposure than those before them with increasing opportunities to access whole genome sequencing (WGS). As YAs, the potential benefits from WGS, through preventative and therapeutic measures lie ahead. WGS results may offer relevant new information to them and their relatives. By nature of genomic data, the act of sharing WGS results with genomic databases or databanks has the potential to improve societal health. Yet, as a group, their preferences towards undertaking WGS and related individual characteristics are little known, requiring further examination. Theoretical models to support research about attitudes and behaviour have not been appraised to address their suitability for use in the context of WGS. Several established models for technology acceptance and health-related behaviours exist yet their appropriateness to the context of WGS remains untested. Appraisal and considered use of theoretical models for research design and analytical purposes is important to increase rigour of empirical studies. Each model reflects different characteristics, influencing the lines of research enquiry. Advancement of appropriately underpinned research facilitates development of comparable empirical research in particular fields of study, such as genomics. Continued examination of the fit between the phenomenon being explored and the theoretical underpinnings themselves is also necessary. This allows gaps to be recognised between models used and reality, furthering understanding and model development or refinement. This PhD thesis was in partnership with Nottingham University Hospitals NHS Trust. Methods: Studies with YAs were informed by literature that related to their use of WGS and theoretical models that could reflect undertaking WGS. A quantitative survey study was undertaken with 112 YAs to identify relationships between their sharing preferences and their gender, educational attainment, STEMM background and genetic knowledge. A WGS Pathway was proposed to reflect the steps of undertaking WGS, receiving results and sharing them. The Proposed WGS Pathway was used to structure the question order for a semi-structured interview study with 11 YAs. Qualitative data were collected and analysed using theme based content analysis. This method simulated YAs’ references and reasons, captured in the order they might occur if the YAs imagined undertaking WGS. An appraisal of theoretical models was undertaken using data collected in the YAs’ studies to inform their relevance and fit to WGS. A WGS framework, constructed to represent YAs’ consideration factors along the WGS Pathway was evaluated by domain experts, who ranked the WGS framework’s factors by likelihood and importance, and shared their views about the Proposed WGS Pathway. Results: Characteristics such as gender and genetic knowledge were statistically significant in relation to YAs’ willingness to engage with and share information about WGS. Themes from interviews indicated YAs had interests related to health and self-discovery. Health professionals and trusted researchers were seen positively for sharing WGS results information with. Appraisal of theoretical models indicated the Theory of Planned Behaviour (TPB) was best placed to support a WGS framework representing findings from the YA studies. From TPB factors presented to them, the domain experts decided utility-related attitudes and perceived behavioural control (PBC) were more important than subjective norms (SN) and external factors. They also identified differences between what factors they perceived YAs would consider compared to those they thought were actually important. Conclusion: The findings demonstrated the significant impact individual characteristics had on YAs’ attitudes towards undertaking WGS, receiving results and sharing genetic information. Analysis of YAs’ responses illustrated areas for further investigation including expectations of WGS and sharing preferences. Appraisal of theoretical models identified the need for a wide lens to incorporate findings about undertaking WGS. Domain experts pointed to a need for YAs to undertake some form of pre-WGS intervention so they may take a step back to make an informed decision about the undertaking. Implications for Practice: The WGS framework offers a successful translation of WGS into services to improve health outcomes for YAs. A clearer understanding of knowledge and educational needs when choosing to undertake WGS, receive results, and make sharing decisions would better inform individuals. Further exploration of YAs’ sharing preferences and attitudes regarding health professionals would contribute to a better understand of factors affecting communication related to WGS and the resulting information. As genomics permeate more into the realms of the quantified self for self-care and healthcare, views of people who are undertaking, receiving and managing their WGS information needs further exploration so systems and services may be designed to meet their evolving needs

PriPA: a tool for privacy-preserving analytics of linguistic data

The days of large amorphous corpora collected with armies of Web crawlers and stored indefinitely are, or should be, coming to an end. There is a wealth of hidden linguistic information which is increasingly difficult to access, hidden in personal and private data that would be unethical and technically challenging to collect using traditional methods such as Web crawling and mass surveillance of online discussion spaces. Advances in privacy regulations such as GDPR and changes in the zeitgeist bring into question the problematic ethical dimension of extracting information from unaware if not unwilling participants. Modern corpora need to adapt, be focused on testing specific hypotheses, and be respectful of the privacy of the people who generated its data. Our work focuses on using a distributed participatory approach and continuous informed consent to solve these issues, by allowing participants to voluntarily contribute their own censored personal data at a granular level. We evaluate our approach in a three-pronged manner, testing the accuracy of measurement of statistical measures of language with respect to standard corpus linguistics tools, evaluating the usability of our application with a participant involvement panel, and using the tool for a case study on health communication

Using online news comments to gather fast feedback on issues with public health messaging: The Guardian as a case study

This study uses corpus linguistics to analyse opinions on messaging and public health measures from one resource—comments posted in response to articles containing references to borders from The Guardian online. Overall, commenters made international, national, and regional comparisons between the and other places, which they considered to be better models for pub health (e.g., Scotland, Germany, and New Zealand). They used criticism of public health measures and guidance as a means to politicise the pandemic; some ironically adapted campaign slogans to comment on leadership and its political decisions. Commenters did not extend lenience to others, who did not follow guidance, despite otherwise finding the messaging confusing. They expressed concern over socio-economic inequalities (class, financial, and regional) resulting from, or exacerbated by, the implementation of COVID-19 measures. Finally, they offered little support for the measures or leadership but did offer recommendations for changes to measures. These results will inform a wider investigation into the reception and evaluation of public health messaging and related measures, and how these change over time following interventions such as the introduction of new messaging campaigns

Public health messaging by political leaders: a corpus linguistic analysis of COVID-19 speeches delivered by Boris Johnson

This study analyses the language of speeches about COVID-19 delivered by Boris Johnson, the Prime Minister of the United Kingdom between 3rd March 2020 and 5th April 2021.We use transcribed speeches to construct a digitised body of texts called a corpus (plural ‘corpora’) that we analyse linguistically. This approach, ‘corpus linguistics’ uses specialist software to identify common patterns that occur in language, including the frequency and usage of specific words. The results reported here will further inform our investigation of the reception and evaluation of public health messaging and related measures which are of key concerns to our project partners Public Health England, Public Health Wales, and NHS Education for Scotland

Privacy Preserving Corpus Linguistics: Investigating the Trajectories of Public Health Messaging Online

The Coronavirus Discourses project supports public health partners Public Health Wales, Public Health England, and NHS Education for Scotland in addressing key challenges that the coronavirus pandemic presents in terms of understanding the flow and impact of public health messages in public and private communications.In this report, we outline a set of guiding principles for privacy- preserving research for researchers and professionals, which applies to a new approach we have developed, mainly relating to the development of PriPA (Privacy Preserving Analytics).Next, we introduce the PriPA (Privacy Preserving Analytics) Extension. The PriPA extension is a digital tool designed for anyone to use on their personal devices. It safely retrieves information about individual language use for analysis. The advantage of this browser extension is that users have full control over what information they want to share

Communicating health threats: Linguistic evidence for effective public health messaging during the Covid-19 pandemic

The Covid-19 pandemic has reinforced the importance of effective and timely public health messaging. As a health threat, the global outbreak of Covid-19 required communication that targeted the entire population while also raising special awareness among segments of the population at higher risk of infection and poor outcomes. At the same time, public health messaging had to be adapted at pace as new evidence about the nature of the virus and the impact of different types of intervention emerged. More than three years into the outbreak of the Covid-19 pandemic, we are able to take stock of the challenges that have surrounded, and continue to affect, effective public health messaging, especially in relation to the notion of risk and at-risk populations, and the different measures that have been implemented to curtail the spread and impact of the virus. In this report we present the findings of the AHRC/UKRI-funded project ‘Coronavirus Discourses: linguistic evidence for effective public health messaging’, which ran from January 2021 to July 2022. The project brought together a multidisciplinary team of linguists, computer scientists and experts in human factors research working in partnership with the UK Health Security Agency, Public Health Wales and NHS Education for Scotland to investigate the trajectories and impact of public health messages during the Covid-19 pandemic. The research team used a wide range of methods, including corpus linguistics (the study of language patterns in large amounts of digitised text), public surveys, and a Public Involvement Panel (PIP) to analyse real-world public health discourse

Charting Ethical Tensions in Multispecies Technology Research through Beneficiary-Epistemology Space

While ethical challenges are widely discussed in HCI, far less is reported about the ethical processes that researchers routinely navigate. We reflect on a multispecies project that negotiated an especially complex ethical approval process. Cat Royale was an artist-led exploration of creating an artwork to engage audiences in exploring trust in autonomous systems. The artwork took the form of a robot that played with three cats. Gaining ethical approval required an extensive dialogue with three Institutional Review Boards (IRBs) covering computer science, veterinary science and animal welfare, raising tensions around the welfare of the cats, perceived benefits and appropriate methods, and reputational risk to the University. To reveal these tensions we introduce beneficiary-epistemology space, that makes explicit who benefits from research (humans or animals) and underlying epistemologies. Positioning projects and IRBs in this space can help clarify tensions and highlight opportunities to recruit additional expertise