The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination.

Genetic discrimination (GD) is the differential or unfair profiling of an individual on the basis of genetic data. This article summarizes the actions of the Genetic Discrimination Observatory (GDO) in addressing GD and recent developments in GD since late 2020. It shows how GD can take many forms in today's rapidly evolving society.

The Emergence and Global Spread of Noninvasive Prenatal Testing.

Since its introduction in 2011, noninvasive prenatal testing (NIPT) has spread rapidly around the world. It carries numerous benefits but also raises challenges, often related to sociocultural, legal, and economic contexts. This article describes the implementation of NIPT in nine countries, each with its own unique characteristics: Australia, Canada, China and Hong Kong, India, Israel, Lebanon, the Netherlands, the United Kingdom, and the United States. Themes covered for each country include the structure of the healthcare system, how NIPT is offered, counseling needs and resources, and cultural and legal context regarding disability and pregnancytermination. Some common issues emerge, including cost as a barrier to equitable access, the complexity of decision-making about public funding, and a shortage of appropriate resources that promote informed choice. Conversely, sociocultural values that underlie the use of NIPT vary greatly among countries. The issues described will become even more challenging as NIPT evolves from a second-tier to a first-tier screening test with expanded use.

Exploring the Ethical, Legal, and Social Implications of ChatGPT in Urology.

PURPOSE OF THE REVIEW: ChatGPT is programmed to generate responses based on pattern recognition. With this vast popularity and exponential growth, the question arises of moral issues, security and legitimacy. In this review article, we aim to analyze the ethical and legal implications of using ChatGPT in Urology and explore potential solutions addressing these concerns. RECENT FINDINGS: There are many potential applications of ChatGPT in urology, and the extent to which it might improve healthcare may cause a profound shift in the way we deliver our services to patients and the overall healthcare system. This encompasses diagnosis and treatment planning, clinical workflow, patient education, augmenting consultations, and urological research. The ethical and legal considerations include patient autonomy and informed consent, privacy and confidentiality, bias and fairness, human oversight and accountability, trust and transparency, liability and malpractice, intellectual property rights, and regulatory framework. The application of ChatGPT in urology has shown great potential to improve patient care and assist urologists in various aspects of clinical practice, research, and education. Complying with data security and privacy regulations, and ensuring human oversight and accountability are some potential solutions to these legal and ethical concerns. Overall, the benefits and risks of using ChatGPT in urology must be weighed carefully, and a cautious approach must be taken to ensure that its use aligns with human values and advances patient care ethically and responsibly.

Social and Ethical Implications of Digital Crisis Technologies: Case Study of Pandemic Simulation Models During the COVID-19 Pandemic.

BACKGROUND: Responses to public health crises are increasingly technological in nature, as the prominence of COVID-19-related statistics and simulations amply demonstrates. However, the use of technologies is preconditional and has various implications. These implications can not only affect acceptance but also challenge the acceptability of these technologies with regard to the ethical and normative dimension. OBJECTIVE: This study focuses on pandemic simulation models as algorithmic governance tools that played a central role in political decision-making during the COVID-19 pandemic. To assess the social implications of pandemic simulation models, the premises of data collection, sorting, and evaluation must be disclosed and reflected upon. Consequently, the social construction principles of digital health technologies must be revealed and examined for their effects with regard to social, ethical, and ultimately political issues. METHODS: This case study starts with a systematization of different simulation approaches to create a typology of pandemic simulation models. On the basis of this, various properties, functions, and challenges of these simulation models are revealed and discussed in detail from a socioscientific point of view. RESULTS: The typology of pandemic simulation methods reveals the diversity of model-driven handling of pandemic threats. However, it is reasonable to assume that the use of simulation models could increasingly shift toward agent-based or artificial intelligence models in the future, thus promoting the logic of algorithmic decision-making in response to public health crises. As algorithmic decision-making focuses more on predicting future dynamics than statistical practices of assessing pandemic events, this study discusses this development in detail, resulting in an operationalized overview of the key social and ethical issues related to pandemic crisis technologies. CONCLUSIONS: This study identifies 3 major recommendations for the future of pandemic crisis technologies.

Mapping ethical, legal, and social implications (ELSI) of fertility preservation.

RESEARCH QUESTION: The study examines the ethical, legal, and social implications of fertility preservation, highlighting its importance across oncofertility, elective egg freezing, and posthumous assisted reproduction, as well as its impact on transgender individuals undergoing gender-affirming surgeries. DESIGN: A comprehensive analysis of 600 articles, focusing on a diverse range of disciplines, including bioethics, psychology, and sociology, to explore public and healthcare professionals' knowledge, patient experiences, and regulatory constraints. RESULTS: The body of literature is growing, indicating increasing recognition of FP's significance. Key themes included the centrality of counseling and informed decision-making, especially in oncofertility and EEF, and ethical debates surrounding informed consent and the autonomy of involved individuals. The analysis underscored a western-centric bias in current research, emphasizing the need for more inclusive and culturally sensitive studies. CONCLUSIONS: The study calls for a nuanced understanding of FP, advocating for policies that consider ethical, cultural, and social dimensions. It suggests the necessity for interdisciplinary research to address identified gaps, particularly in understanding non-Western perspectives and ensuring equitable access to FP services globally. Moreover, the review emphasizes the importance of integrating patient-centric approaches and ethical frameworks to guide FP practices and policies, ensuring they respect diverse values and meet individuals' needs.

Mapping ethical, legal, and social implications (ELSI) of preimplantation genetic testing (PGT).

PURPOSE: Preimplantation Genetic Testing (PGT) has attracted considerable ethical, legal, and social scrutiny, but academic debate often fails to reflect clinical realities. METHODS: Addressing this disconnect, a review of 506 articles from 1999 to 2019 across humanities and social sciences was conducted to synthesize the Ethical, Legal, and Social Implications (ELSI) of PGT. This review mined PubMed, WoS, and Scopus databases, using both MeSH terms and keywords to map out the research terrain. RESULTS: The findings reveal a tenfold increase in global research output on PGT's ELSI from 1999 to 2019, signifying rising interest and concern. Despite heightened theoretical discourse on selecting "optimal" offspring, such practices were scarcely reported in clinical environments. Conversely, critical issues like PGT funding and familial impacts remain underexplored. Notably, 86% of the ELSI literature originates from just 12 countries, pointing to a research concentration. CONCLUSION: This review underscores an urgent need for ELSI research to align more closely with clinical practice, promoting collaborations among ethicists, clinicians, policymakers, and economists. Such efforts are essential for grounding debates in practical relevance, ultimately steering PGT towards ethical integrity, societal acceptance, and equitable access, aiming to harmonize PGT research with real-world clinical concerns, enhancing the relevance and impact of future ethical discussions.

Mapping Ethical, Legal, and Social Implications (ELSI) of gamete donation.

RESEARCH QUESTION: This scoping review investigates the Ethical, Legal, and Social Implications (ELSI) of gamete donation, a critical facet of Assisted Reproductive Technologies, by analyzing the evolving research scope, methodological approaches, and the geographical skew in the literature. Despite the increased global uptake of donor gametes, current scholarship predominantly emanates from Western contexts and focuses on majoritized groups. This bias constrains the universality of research findings and limits their applicability across varied legal, cultural, and social contexts, underscoring a need for broader inclusivity. DESIGN: We addressed 867 pivotal articles published between 1999 and 2019. RESULTS: Our analysis reveals a discernible escalation in research volume, with 62% based on empirical research. The intellectual landscape unfolds into four dominant clusters: Regulatory Frameworks, Incentives, and Access; Family Dynamics and Genetic Linkages; Identity and Privacy in Donor Conception; and Cultural and Societal Attitudes towards GD. Each cluster highlights nuanced dimensions of gamete donation, from regulatory intricacies and psychological welfare to identity ethics and cultural perceptions. CONCLUSION: Our findings advocate for a shift towards more globally representative and methodologically inclusive research. By integrating diverse cultural narratives and expanding geographical breadth, future research can offer holistic understandings of gamete donation, fostering equitable and culturally resonant practices and policies worldwide.

Co-worker phubbing: A qualitative exploration of smartphone use during work breaks.

INTRODUCTION: The present study qualitatively explores co-worker "phubbing" (from "phone" and "snubbing") during communal work breaks. Phubbing, or ignoring others by paying attention to one's phone, has been linked to a range of negative interpersonal and intrapersonal outcomes. Although most research has targeted private relationships, there are indications that lateral work relationships may be similarly affected, with potential consequences at the individual, group, and organizational levels. METHODS: Interviews were conducted with 25 Swedish employees in the electrical trade (n = 13) and health care (n = 12), groups that typically work alongside colleagues and regularly take communal breaks. The interviews were analyzed using thematic analysis. RESULTS: Five main themes were identified: (1) phubbing as a social barrier, (2) the socially integrated smartphone, (3) intentional and unintentional phubbing, (4) navigating phubbing norms, and (5) generational differences in phubbing behavior and attitudes. CONCLUSION: The findings indicate that work break phubbing could potentially undermine interpersonal aspects of the psychosocial work environment. However, this was also seen as contingent on social norms and individual needs and preferences. Discussing phubbing in the workplace may be a way of mitigating negative effects by bridging disparate expectations.

Financial burden and social implications of chronic liver disease in a patient population group in Pakistan.

Objective: To assess economic and social issues faced by cirrhotic patients & its financial burden for developing nations like Pakistan. Method: This cross-sectional study was carried out at the Department of Gastroenterology & Hepatology, Shaikh Zayed Hospital, Lahore, Pakistan during the period between July & December 2019. Patients with liver cirrhosis were recruited and information regarding disease, financial status, treatment expenses & dependency was recorded. Results: A total of 450 patients were recruited, 272 (60%) were males & 178 (40%) were females, with mean age 55.4±6.2 years. HCV was cause of cirrhosis in 86% of cases, 65% were diagnosed incidentally and 39.6% were illiterate. About 82.7% were urban while only 28.7% own their own home. Co-morbid conditions including diabetes, hypertension & ischemic heart disease were present in 54% of cases. Monthly income was

Evaluating standards for 'serious' disease for preimplantation genetic testing: a multi-case study on regulatory frameworks in Japan, the UK, and Western Australia.

BACKGROUND: A number of countries are leading the way in creating regulatory frameworks for preimplantation genetic testing (PGT). Among these countries, a point of consensus is that PGT may be used to avoid the birth of a child with a serious genetic disease. However, standards for evaluating disease severity in this context are not always clear. Considering the numerous medical and social implications of defining a standard for serious disease, our study sought out to better understand how disease severity for PGT is being defined by analyzing and comparing the regulatory landscapes for PGT in various countries. METHODS: We carried out a multi-case study analysis using policy documents from the UK, Western Australia, and Japan. Documentary analysis was used to analyze and compare these documents in terms of medical indications for PGT, evaluation methods of applications for PGT, and review frameworks used during the evaluation process, which includes the specific medical and social factors that are considered. RESULTS: Within our three case studies, medical indications for PGT are based on an estimated risk of the woman giving birth to a child with a genetic abnormality with known clinical deficits. Evaluation methods for approving applications for PGT include reference to a pre-approved list of genetic conditions (the UK) and case-by-case reviews (all case studies). Review frameworks for case-by-case reviews include reference to a list of considered factors (the UK and Western Australia) and a definition statement of disease severity (Japan), which provide insight into interpretations of disease severity in each context. CONCLUSIONS: The results of this study point to the possible medical and social impacts of PGT regulatory frameworks on multiple stakeholders. Furthermore, it suggests that impacts in this case are not only caused by whether PGT is permitted or not, but also by the circumstances under which it is allowed and how decisions regarding its approval are made. Our results may serve as valuable insights for countries that already have established policy for PGT but are considering revision, countries that are without policy, and for discussions on related genetic and reproductive technologies.

Acceptability of prenatal diagnosis and prenatal treatment of haemophilia using cell and gene therapies within US haemophilia community.

BACKGROUND: The overall burden of disease in persons with haemophilia continues to be high despite the latest advancements in therapeutics. Clinical trials testing prenatal treatments for several genetic disorders are underway or are recruiting subjects, attesting to the much-needed change in paradigm of how patients with monogenic disorders can be treated. Here we investigate the overall attitude towards prenatal diagnosis, preferences on types of prenatal therapies for haemophilia, the level of 'acceptable' risk tolerated, and which social and moral pressures or disease personal experiences may predict willingness of individuals to consider foetal therapy in a future pregnancy. RESULTS: A multidisciplinary team designed the survey, and the study was carried out using REDCap, and publicized through the National Haemophilia Foundation. Subjects ≥18 years of age were eligible to participate in the study. We assessed participants' attitudes towards prenatal therapy and their level of 'acceptable' risk towards the procedure and therapy. The survey was completed by 67 adults, the majority females. Respondents were willing to undergo prenatal diagnosis, and their main concerns related to the well-being of the pregnant woman and the foetus regarding lasting therapeutic efficacy, side effects of the therapy, and procedural risks, but they were likely to accept a wide range of prenatal therapeutic options, particularly if the foetal therapy proved to be long-lasting and safe. CONCLUSIONS: These data demonstrate the willingness of persons with haemophilia, and the haemophilia community, to explore new treatment options beyond the currently offered approaches.

Application of Fuzzy Composite Programming in a Questionnaire as a Methodological Test to Study the Effect of Reservoir Management on Social Interests-A Survey Based on Two Case Studies in Southern Germany.

To understand the concerns, approvals and disapprovals of expert opinions about managerial issues from around reservoirs this study uses the approach of Fuzzy Composite Programming (FCP) in direct questionnaires to parameterize and rate a set of indicators with statements about managerial issues concerning societal implications by the responding experts. The personal ratings get summarized in four different layers and converted into one final numerical value which will be in the range of 0 as the absolute disapproval of the indicators and 1 as the absolute approval of the indicators. The FCP approach thereby rates the individual indicator, secondly the indicator category, thirdly the compensational factor and fourthly the dimensions of sustainability. This facilitates a rapid comparison of results of rather complicated sets of pre-set indicators in topics reaching from legal issues to societal concerns in one final numerical value to identify crucial topics and start open debates. This study was carried out as a methodological test at two water reservoirs in southern Germany. The results show a general possibility of using a rather retrospect methodology towards current ratings of experts in the field of reservoir management. 10 respondents answered the FCP questionnaires, 5 at each study site. The scores of the calculation showed a higher level of positive connection in the case of the Schwarzenbachtalsperre (SBT) with a score of 0.77, compared to a score of 0.54 in the case of the Franconian Lake District (FLD). Apart from the pure numerical scores, FCP can show conflicting issues and possible compromise solutions between the different stakeholders, in/based on the individual ratings. The findings could help reach a more sustainable management of water resources that includes all stakeholders, by pointing out debatable implications.

Mobility and Dual Tasking in the Everyday Lives of Adults with Multiple Sclerosis: A Qualitative Exploration.

OBJECTIVE: The purpose of the study was to understand how people with multiple sclerosis experience dual-tasking situations in their everyday lives. METHODS: Focus groups involving a total of 11 individuals with multiple sclerosis (eight females and three males) participated in this qualitative inquiry. Participants were asked open-ended questions focused on the nature of and consequences around dual tasking when standing or walking. Reflexive thematic analysis was employed to examine the data. RESULTS: Three themes were generated from the data: (a) Life Is a Dual Task, (b) The Social Divide, and (c) Sacrifices for Stability. CONCLUSIONS: This study highlights the significance and impact of dual tasking on the lived experience of adults with multiple sclerosis, furthering the need to more fully examine this phenomenon and potentially improve fall-prevention interventions and facilitate community participation.

Learning and happiness during Covid-19 school closure in urban Malaysia.

COVID-19 school closure has disrupted education systems globally raising concerns over learning time loss. At the same time, social isolation at home has seen a decline in happiness level among young learners. Understanding the link between cognitive effort and emotional wellbeing is important for post-pandemic learning recovery interventions particularly if there is a feedback loop from happiness to learning. In this context, we use primary survey data collected during the first school closure in urban Malaysia to study the complex association between learning loss and student happiness. Machine learning methods are used to accommodate the multi-dimensional and interaction effects between the covariates that influence this association. Empirically, we find that the most important covariates are student gender, social economic status (SES) proxied by the number of books ownership, time spent on play and religious activity. Based on the results, we develop a conceptual framework of learning continuity by formalizing the importance of investment in emotional wellbeing.

Perception of personalized medicine, pharmacogenomics, and genetic testing among undergraduates in Hong Kong.

BACKGROUND: The global development and advancement of genomic medicine in the recent decade has accelerated the implementation of personalized medicine (PM) and pharmacogenomics (PGx) into clinical practice, while catalyzing the emergence of genetic testing (GT) with relevant ethical, legal, and social implications (ELSI). RESULTS: The perception of university undergraduates with regards to PM and PGx was investigated, and 80% of undergraduates valued PM as a promising healthcare model with 66% indicating awareness of personal genome testing companies. When asked about the curriculum design towards PM and PGx, compared to undergraduates in non-medically related curriculum, those studying in medically related curriculum had an adjusted 7.2 odds of perceiving that their curriculum was well-designed for learning PGx (95% CI 3.6-14.6) and a 3.7 odds of perceiving that PGx was important in their study (95% CI 2.0-6.8). Despite this, only 16% of medically related curriculum undergraduates would consider embarking on future education on PM. When asked about their perceptions on GT, 60% rated their genetic knowledge as "School Biology" level or below while 76% would consider undergoing a genetic test. As for ELSI, 75% of undergraduates perceived that they were aware of ethical issues of GT in general, particularly on "Patient Privacy" (80%) and "Data Confidentiality" (68%). Undergraduates were also asked about their perceived reaction upon receiving an unfavorable result from GT, and over half of the participants perceived that they would feel "helpless or pessimistic" (56%), "inadequate or different" (59%), and "disadvantaged at job seeking" (59%), while older undergraduates had an adjusted 2.0 odds of holding the latter opinion (95% CI 1.1-3.5), compared to younger undergraduates. CONCLUSION: Hong Kong undergraduates showed a high awareness of PM but insufficient genetic knowledge and low interest in pursuing a career towards PM. They were generally aware of ethical issues of GT and especially concerned about patient privacy and data confidentiality. There was a predominance of pessimistic views towards unfavorable testing results. This study calls for the attention to evaluate education and talent development on genomics, and update existing legal frameworks on genetic testing in Hong Kong.

Reproduction and genetic causal attribution of epilepsy.

OBJECTIVE: This study addresses the contribution of genetics-related concerns to reduced childbearing among people with epilepsy. METHODS: Surveys were completed by 606 adult patients with epilepsy of unknown cause at our medical center. Poisson regression analysis was used to assess the relations of number of offspring to: (1) genetic attribution (GA: participants' belief that genetics was a cause of their epilepsy), assessed via a novel scale developed from four survey items (Cronbach's alpha = .89), (2) participants' estimates of epilepsy risk in the child of a parent with epilepsy (1%, 5%-10%, 25%, and 50%-100%), and (3) participants' reports of the influence on their reproductive decisions of "the chance of having a child with epilepsy" (none/weak/moderate, strong/very strong). Analyses were adjusted for age, education, race/ethnicity, religion, type of epilepsy (generalized, focal, and both/unclassifiable), and age at epilepsy onset (<10, 10-19, and ≥20 years). RESULTS: Among participants 18-45 years of age, the number of offspring decreased significantly with increasing GA (highest vs lowest GA quartile rate ratio [RR] = .5, p < .001), and increasing estimated epilepsy risk in offspring (with 5%-10% as referent because it is closest to the true value, RR for 25%: .7, p = .05; RR for 50%-100%: .6, p = .03). Number of offspring was not related to the reported influence of "the chance of having a child with epilepsy" on reproductive decisions. Among participants >45 years of age, the number of offspring did not differ significantly according to GA quartile or estimated offspring epilepsy risk. However, those reporting a strong/very strong influence on their reproductive decisions of "the chance of having a child with epilepsy" had only 60% as many offspring as others. SIGNIFICANCE: These findings suggest that overestimating the risk of epilepsy in offspring can have important consequences for people with epilepsy. Patient and provider education about recurrence risks and genetic testing options to clarify risks are critical, given their potential influence on reproductive decisions.

ICT enabled Almajiri education in Nigeria: Challenges and prospects.

The Almajiri children in Nigeria are deserving of special interventions to reduce the life-long divide in educational achievement, social status, and economic empowerment. One way of speedily achieving this is through the use of Information and Communication Technologies (ICTs). This study examined the prospects and challenges of using ICT in the teaching and learning processes of Almajiri children's education in Nigeria. A descriptive research methodology was adopted and data were collected from the Almajiri children, their teachers, and parents from communities with a high concentration of Almajiri schools. The results showed that while the official language of instruction in schools in Nigeria is English, the language often spoken by children and teachers was Hausa. Also, while teachers and parents were quite familiar with ICTs such as mobile phones, computers, and television, the Almajiri children were more familiar with television and mobile phones, and very few had used a computer. Some strategies proposed for successful adoption of ICT in Almajiri education include the use of indigenous languages in courseware development and the use of one-to-many ICT facilities, such as multimedia teaching aids, projectors, and smart televisions.

Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI).

BACKGROUND: Genetic/genomic testing (GGT) are useful tools for improving health and preventing diseases. Still, since GGT deals with sensitive personal information that could significantly impact a patient's life or that of their family, it becomes imperative to consider Ethical, Legal and Social Implications (ELSI). Thus, ELSI studies aim to identify and address concerns raised by genomic research that could affect individuals, their family, and society. However, there are quantitative and qualitative discrepancies in the literature to describe the elements that provide content to the ELSI studies and such problems may result in patient misinformation and harmful choices. METHODS: We analyzed the major international documents published by international organizations to specify the parameters that define ELSI and the recognized criteria for GGT, which may prove useful for researchers, health professionals and policymakers. First, we defined the parameters of the ethical, legal and social fields in GGT to avoid ambiguities when using the acronym ELSI. Then, we selected nine documents from 44 relevant publications by international organizations related to genomic medicine. RESULTS: We identified 29 ELSI sub-criteria concerning to GGT, which were organized and grouped within 10 minimum criteria: two from the ethical field, four from the legal field and four from the social field. An additional analysis of the number of appearances of these 29 sub-criteria in the analyzed documents allowed us to order them and to determine 7 priority criteria for starting to evaluate and propose national regulations for GGT. CONCLUSIONS: We propose that the ELSI criteria identified herein could serve as a starting point to formulate national regulation on personalized genomic medicine, ensuring consistency with international bioethical requirements.

Transformation of the Taiwan Biobank 3.0: vertical and horizontal integration.

Researchers expect a high quality of biospecimens/data and value-added services from biobanks. Therefore, the concept of "biobank 3.0" was introduced so that biobanks could better meet the needs of stakeholders and maintain sustainable operations. Theoretically, the Taiwan Biobank (TWB) has already gone through the concepts of biobank 1.0 and 2.0. However, three challenges still need to be addressed before it can be transformed into a new generation of the TWB (namely, the TWB 3.0): (1) the difficulty of integrating other biobanks' resources, (2) the efficiency and effectiveness of the release and use of biospecimens/data, and (3) the development of income and revenue models of sustainability. To address these issues, this paper proposes a framework for the TWB 3.0 transformation based on a dual-pillar approach composed of a "physically" vertical integration driven by the TWB and a "virtually" horizontal network led by the National Health Research Institutes (NHRI) of Taiwan. Using prominent biobanks such as the Biobanking and BioMolecular Resources Research Infrastructure-European Research Infrastructure Consortium (BBMRI-ERIC), the UK Biobank, and the National Institutes of Health (NIH)'s All of Us Research Program as models, the TWB can strengthen its on-going TWB 2.0 operations in regional and/or international collaboration, increase the value of data collected and develop closer relationships with biobank participants and users. To these ends, the authors highlight key issues that include, but are not limited to, the harmonization of relevant ELSI standards for various biobanks' integrations; the value-added services and the efficiency of Big Data Era related research and/or precision medicine development, and financial concerns related to biobank sustainability. This paper concludes by discussing how greater participant engagement and the uptake of Information Technology (IT) and Artificial Intelligence (AI) applications can be used in partnership with vertical and horizontal integration as part of a four-pronged approach to promote biobank sustainability, and facilitate the TWB 3.0 transformation.

Toward the Development of Data Governance Standards for Using Clinical Free-Text Data in Health Research: Position Paper.

BACKGROUND: Clinical free-text data (eg, outpatient letters or nursing notes) represent a vast, untapped source of rich information that, if more accessible for research, would clarify and supplement information coded in structured data fields. Data usually need to be deidentified or anonymized before they can be reused for research, but there is a lack of established guidelines to govern effective deidentification and use of free-text information and avoid damaging data utility as a by-product. OBJECTIVE: This study aimed to develop recommendations for the creation of data governance standards to integrate with existing frameworks for personal data use, to enable free-text data to be used safely for research for patient and public benefit. METHODS: We outlined data protection legislation and regulations relating to the United Kingdom for context and conducted a rapid literature review and UK-based case studies to explore data governance models used in working with free-text data. We also engaged with stakeholders, including text-mining researchers and the general public, to explore perceived barriers and solutions in working with clinical free-text. RESULTS: We proposed a set of recommendations, including the need for authoritative guidance on data governance for the reuse of free-text data, to ensure public transparency in data flows and uses, to treat deidentified free-text data as potentially identifiable with use limited to accredited data safe havens, and to commit to a culture of continuous improvement to understand the relationships between the efficacy of deidentification and reidentification risks, so this can be communicated to all stakeholders. CONCLUSIONS: By drawing together the findings of a combination of activities, we present a position paper to contribute to the development of data governance standards for the reuse of clinical free-text data for secondary purposes. While working in accordance with existing data governance frameworks, there is a need for further work to take forward the recommendations we have proposed, with commitment and investment, to assure and expand the safe reuse of clinical free-text data for public benefit.