المؤلفون: Avery Adams, Jerome Atutornu, Hugbaad Aidid, Julian Borra, Daniela Boraschi, Claudette Burch, Tuba Bircan, Anna Dickinson, Alessia Costa, Catherine Galloway, Ann Enticknap, Emma Garlick, Francesca Gale, Sasha Henriques, Em Haydon, Richard Milne, Marion Mitchell, Katherine I Morley, Jack Monaghan, Laura Olivares Boldu, Milena Muella Santos, Kate Orviss, Fifi Olumogba, Christine Patch, Vivienne Parry, Sam Shingles, Lauren Robarts, Ben Tomlin, Cindy Smidt, Sarah Parkinson, Anna Middleton

المصدر: Wellcome Open Research, Vol 8 (2023)

مصطلحات موضوعية: Genetics, genomics, public engagement, Responsible Research and Innovation, inclusivity, participation, eng, Medicine, Science

الوصف: As detailed in its flagship report, Genome UK, the UK government recognises the vital role that broad public engagement across whole populations plays in the field of genomics. However, there is limited evidence about how to do this at scale. Most public audiences do not feel actively connected to science, are often unsure of the relevance to their lives and rarely talk to their family and friends about it; we term this dis-connection a ‘disengaged public audience’. We use a narrative review to explore: (i) UK attitudes towards genetics and genomics and what may influence reluctance to engage with these topics; (ii) innovative public engagement approaches that have been used to bring diverse public audiences into conversations about the technology. Whilst we have found some novel engagement methods that have used participatory arts, film, social media and deliberative methods, there is no clear agreement on best practice. We did not find a consistently used, evidence-based strategy for delivering public engagement about genomics across diverse and broad populations, nor a specific method that is known to encourage engagement from groups that have historically felt (in terms of perception) and been (in reality) excluded from genomic research. We argue there is a need for well-defined, tailor-made engagement strategies that clearly articulate the audience, the purpose and the proposed impact of the engagement intervention. This needs to be coupled with robust evaluation frameworks to build the evidence-base for population-level engagement strategies.

وصف الملف: electronic resource

العلاقة: https://wellcomeopenresearch.org/articles/8-310/v2Test; https://doaj.org/toc/2398-502XTest

الوصول الحر: https://doaj.org/article/31d170914e3e4fdaa6f2fafdeedee373Test

المؤلفون: Richard Milne, Katherine I. Morley, Mohamed A. Almarri, Shamim Anwer, Jerome Atutornu, Elena E. Baranova, Paul Bevan, Maria Cerezo, Yali Cong, Alessia Costa, Christine Critchley, Josepine Fernow, Peter Goodhand, Qurratulain Hasan, Aiko Hibino, Gry Houeland, Heidi C. Howard, S. Zakir Hussain, Charlotta Ingvoldstad Malmgren, Vera L. Izhevskaya, Aleksandra Jędrzejak, Cao Jinhong, Megumi Kimura, Erika Kleiderman, Brandi Leach, Keying Liu, Deborah Mascalzoni, Álvaro Mendes, Jusaku Minari, Dianne Nicol, Emilia Niemiec, Christine Patch, Jack Pollard, Barbara Prainsack, Marie Rivière, Lauren Robarts, Jonathan Roberts, Virginia Romano, Haytham A. Sheerah, James Smith, Alexandra Soulier, Claire Steed, Vigdis Stefànsdóttir, Cornelia Tandre, Adrian Thorogood, Torsten H. Voigt, Nan Wang, Anne V. West, Go Yoshizawa, Anna Middleton

المصدر: Genome Medicine, Vol 13, Iss 1, Pp 1-12 (2021)

مصطلحات موضوعية: Medicine, Genetics, QH426-470

الوصف: Abstract Background Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this. Methods We analyse the ‘Your DNA, Your Say’ online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle- and high-income countries, gathered in 15 languages. We examine how participants perceived the relative value of measures to demonstrate the trustworthiness of those using donated DNA and/or medical information. We examine between-country variation and present a consolidated ranking of measures. Results Providing transparent information about who will benefit from data access was the most important measure to increase trust, endorsed by more than 50% of participants across 20 of 22 countries. It was followed by the option to withdraw data and transparency about who is using data and why. Variation was found for the importance of measures, notably information about sanctions for misuse of data—endorsed by 5% in India but almost 60% in Japan. A clustering analysis suggests alignment between some countries in the assessment of specific measures, such as the UK and Canada, Spain and Mexico and Portugal and Brazil. China and Russia are less closely aligned with other countries in terms of the value of the measures presented. Conclusions Our findings highlight the importance of transparency about data use and about the goals and potential benefits associated with data sharing, including to whom such benefits accrue. They show that members of the public value knowing what benefits accrue from the use of data. The study highlights the importance of locally sensitive measures to increase trust as genomic data sharing continues globally.

وصف الملف: electronic resource

العلاقة: https://doaj.org/toc/1756-994XTest

الوصول الحر: https://doaj.org/article/abf880e667a640afbd423e6e9e373400Test

المؤلفون: Jerome Atutornu, Richard Milne, Alesia Costa, Christine Patch, Anna Middleton

المصدر: EBioMedicine, Vol 76, Iss , Pp 103879- (2022)

مصطلحات موضوعية: Diversity, Inclusion, Equity, Justice, Genomics research, Medicine, Medicine (General), R5-920

الوصف: Summary: The representation of traditionally scientifically underserved groups in genomic research continues to be low despite concerns about equity and social justice and the scientific and clinical need. Among the factors that account for this are a lack of trust in the research community and limited diversity in this community. The success of the multiple initiatives that aim to improve representation relies on the willingness of underrepresented populations to make data and samples available for research and clinical use. In this narrative review, we propose that this requires building trust, and set out four approaches to demonstrating trustworthiness, including increasing diversity in the research workforce, and meaningful engagement with underrepresented communities in a culturally and linguistically appropriate manner. Capacity building globally will ensure that actual and perceived exploitation and ‘helicopter’ research could be eliminated.

وصف الملف: electronic resource

العلاقة: http://www.sciencedirect.com/science/article/pii/S2352396422000639Test; https://doaj.org/toc/2352-3964Test

الوصول الحر: https://doaj.org/article/ee2373bc120040059c07fcef9f95e833Test

المؤلفون: Richard Milne (10875017), Katherine I. Morley (10875020), Mohamed A. Almarri (6038108), Shamim Anwer (10875023), Jerome Atutornu (10875026), Elena E. Baranova (10875029), Paul Bevan (10875032), Maria Cerezo (4858756), Yali Cong (10744958), Alessia Costa (10875035), Christine Critchley (644098), Josepine Fernow (10875038), Peter Goodhand (6157697), Qurratulain Hasan (7947497), Aiko Hibino (10875041), Gry Houeland (10875044), Heidi C. Howard (10875047), S. Zakir Hussain (10875050), Charlotta Ingvoldstad Malmgren (10875053), Vera L. Izhevskaya (10875056), Aleksandra Jędrzejak (10875059), Cao Jinhong (10875062), Megumi Kimura (6111824), Erika Kleiderman (5003609), Brandi Leach (10875065), Keying Liu (10875068), Deborah Mascalzoni (76505), Álvaro Mendes (10875071), Jusaku Minari (2236939), Dianne Nicol (5624477), Emilia Niemiec (8230986), Christine Patch (10875074), Jack Pollard (463829), Barbara Prainsack (360706), Marie Rivière (10875077), Lauren Robarts (10875080), Jonathan Roberts (190787), Virginia Romano (10875083), Haytham A. Sheerah (10098594), James Smith (51839), Alexandra Soulier (8568303), Claire Steed (10875086), Vigdis Stefànsdóttir (10875089), Cornelia Tandre (10875092), Adrian Thorogood (5316602), Torsten H. Voigt (10875095), Nan Wang (21935), Anne V. West (10875098), Go Yoshizawa (3412559), Anna Middleton (4046554)

مصطلحات موضوعية: Biotechnology, Science Policy, genomic data, UK, 22 countries Abstract Background Pu., DNA, increase trust

الوصف: Additional file 1. Additional tables and figures related to the Your DNA, Your Say sample and responses in pdf format.

العلاقة: https://figshare.com/articles/journal_contribution/Additional_file_1_of_Demonstrating_trustworthiness_when_collecting_and_sharing_genomic_data_public_views_across_22_countries/14677154Test

الإتاحة: https://doi.org/10.6084/m9.figshare.14677154.v1Test

المؤلفون: Anna, Middleton, Christine, Patch, Jonathan, Roberts, Richard, Milne, Alessia, Costa, Lauren, Robarts, Jerome, Atutornu

مصطلحات موضوعية: Genetic Privacy, Genetics, Medical, Health Personnel, Humans, Informed Consent, United Kingdom

الوصف: The legal duty to protect patient confidentiality is common knowledge amongst healthcare professionals. However, what may not be widely known, is that this duty is not always absolute. In the United Kingdom, both the General Medical Council governing the practice of all doctors, as well as many other professional codes of practice recognise that, under certain circumstances, it may be appropriate to break confidentiality. This arises when there is a wider duty to protect the health of others, and when the risk of non-disclosure outweighs the potential harm from breaking confidentiality. We discuss this situation specifically in relation to genomic medicine where relatives in a family may have differing views on the sharing of familial genetic information. Overruling a patient's wishes is predicated on balancing the duty of care towards the patient versus protecting their relative from serious harm. We discuss the practice implications of a pivotal legal case that concluded recently in the High Court of Justice in England and Wales, ABC v St Georges Healthcare NHS Trust & Ors. Professional guidance is already clear that genetic healthcare professionals must undertake a balancing exercise to weigh up contradictory duties of care. However, the judge has provided a new legal weighting to these professional duties: 'The scope of the duty extends not only to conducting the necessary balancing exercise but also to acting in accordance with its outcome' [1: 189]. In the context of genomic medicine, this has important consequences for clinical practice.

وصف الملف: Print-Electronic; application/pdf

العلاقة: https://www.repository.cam.ac.uk/handle/1810/307109Test

الإتاحة: https://doi.org/10.17863/CAM.54202Test
https://www.repository.cam.ac.uk/handle/1810/307109Test

المؤلفون: Christopher M. Hayre, Hilary Bungay, Christopher Jeffery, Christopher Cobb, Jerome Atutornu

مصطلحات موضوعية: research

الوصف: Description to be added.Cannot be left empty

العلاقة: 10779/aru.23777415.v1; https://figshare.com/articles/journal_contribution/Response_to_letter_Can_placing_lead-rubber_inferolateral_to_the_light_beam_diaphragm_limit_ionising_radiation_to_multiple_radiosensitive_organs_/23777415Test

الإتاحة: https://figshare.com/articles/journal_contribution/Response_to_letter_Can_placing_lead-rubber_inferolateral_to_the_light_beam_diaphragm_limit_ionising_radiation_to_multiple_radiosensitive_organs_/23777415Test

المؤلفون: Christopher M. Hayre, Jerome Atutornu

المصدر: Journal of Medical Imaging and Radiation Sciences

مصطلحات موضوعية: Higher education, academia, Article, 030218 nuclear medicine & medical imaging, 03 medical and health sciences, 0302 clinical medicine, quantitative, Health care, Humans, survey, Radiology, Nuclear Medicine and imaging, Precision Medicine, radiotherapy, Response rate (survey), Medical education, Radiological and Ultrasound Technology, business.industry, Personalized medicine, United Kingdom, Radiography, 030220 oncology & carcinogenesis, qualitative, Curriculum, Radiology, business, Psychology

الوصف: Introduction This article explores the application of personalized medicine (PM) within the academic environment in the United Kingdom. There is a growing acceptance of the utility of PM in health care and the role medical imaging can play. In response, this article explored the views and opinions of diagnostic and therapeutic academics and the utilization of PM in education. Methods This study primarily adopted a quantitative approach using an online survey. However, participants were also encouraged to provide qualitative comments in response to open-ended questions. The survey was distributed to radiography and radiotherapy academic departments, which received a response rate of 29%. Results The findings identify some important considerations. On the one hand some participants reported teaching PM on their programmes (24%, n = 16), whereas 30% (n = 20) did not. Importantly, the remaining academics (46%) were either unsure or did not know what PM was. This finding, coincided with qualitative commentary, highlights some discrepancies linked to knowledge and understanding of PM within higher education and highlights areas where academics may need additional support. Conclusion This article concludes by recognizing the challenges of delivering PM by some academics. It is noted that although the findings cannot be fully generalized, it does highlight fragmented understanding of PM among academic staff. This is important to reflect upon following the increasing requirements for radiography to become “more personalized.”

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::4fce6eac858ae1b4be1d71db2739d02eTest
https://doi.org/10.1016/j.jmir.2020.05.013Test

المؤلفون: Richard Milne, Katherine I. Morley, Mohamed A. Almarri, Jerome Atutornu, Elena E. Baranova, Paul Bevan, Maria Cerezo, Yali Cong, Alessia Costa, Carolina Feijao, Cláudia de Freitas, Josepine Fernow, Peter Goodhand, Qurratulain Hasan, Aiko Hibino, Gry Houeland, Heidi C. Howard, Zakir Hussain Sheikh, Charlotta Ingvoldstad Malmgren, Vera L. Izhevskaya, Aleksandra Jędrzejak, Cao Jinhong, Megumi Kimura, Erika Kleiderman, Keying Liu, Deborah Mascalzoni, Álvaro Mendes, Jusaku Minari, Dianne Nicol, Emilia Niemiec, Christine Patch, Barbara Prainsack, Marie Rivière, Lauren Robarts, Jonathan Roberts, Virginia Romano, Haytham A. Sheerah, James Smith, Alexandra Soulier, Claire Steed, Vigdis Stefànsdóttir, Cornelia Tandre, Adrian Thorogood, Torsten H. Voigt, Nan Wang, Go Yoshizawa, Anna Middleton

المصدر: Genetics in Medicine

مصطلحات موضوعية: Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi, DNA, Intention, Genomics, Health Care Service and Management, Health Policy and Services and Health Economy, Return of results, United States, Attitude, Surveys and Questionnaires, Attitudes, Data donation, International, Humans, International research results, Genetics (clinical)

الوصف: Purpose: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods: We analyzed the “Your DNA, Your Say” online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic results to date. Results: There was substantial variation in the extent to which respondents reported being influenced by RoR. However, only respondents from Russia were more influenced than those from the United States, and respondents from 20 countries had lower odds of being partially or wholly influenced than those from the United States. Conclusion: There is substantial international variation in the extent to which the RoR may motivate people’s intent to donate DNA or health data. The United States may not be a clear indicator of global attitudes. Participants’ preferences for return of genomic results globally should be considered. This work was supported by Wellcome grant 206194 to Society and Ethics Research, Wellcome Connecting Science, Wellcome Genome Campus.

وصف الملف: application/pdf

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::8a5c870a4eb863859c89f39ae03fbc06Test
http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-468511Test

المؤلفون: Lauren Farley, Dianne Nicol, James Smith, Adrian Thorogood, Jerome Atutornu, Katherine I. Morley, Claire Steed, Heidi Carmen Howard, Christine Critchley, Paul Bevan, Anna Middleton, Barbara Prainsack, Danya F. Vears, Erika Kleiderman, Emilia Niemiec, Peter Goodhand, Richard Milne

المساهمون: Middleton, Anna [0000-0003-3103-8098], Apollo - University of Cambridge Repository

المصدر: Human Genetics

مصطلحات موضوعية: Adult, Male, Medical Ethics, Canada, Genetic Research, Adolescent, Big data, Information Dissemination, Legislation, Biology, Trust, Medicinsk etik, Young Adult, 03 medical and health sciences, Databases, Genetic, Genetics, Humans, Relevance (law), Child, Survey, health care economics and organizations, Genetics (clinical), Original Investigation, 030304 developmental biology, 0303 health sciences, Genome, business.industry, 030305 genetics & heredity, Australia, Genomics, Tvärvetenskapliga studier inom samhällsvetenskap, Middle Aged, Public, Public relations, Donation, Biobank, United Kingdom, United States, Latent class model, 3. Good health, Data sharing, Cross-Sectional Studies, Female, Social Sciences Interdisciplinary, business

الوصف: Trust may be important in shaping public attitudes to genetics and intentions to participate in genomics research and big data initiatives. As such, we examined trust in data sharing among the general public. A cross-sectional online survey collected responses from representative publics in the USA, Canada, UK and Australia (n = 8967). Participants were most likely to trust their medical doctor and less likely to trust other entities named. Company researchers were least likely to be trusted. Low, Variable and High Trust classes were defined using latent class analysis. Members of the High Trust class were more likely to be under 50 years, male, with children, hold religious beliefs, have personal experience of genetics and be from the USA. They were most likely to be willing to donate their genomic and health data for clinical and research uses. The Low Trust class were less reassured than other respondents by laws preventing exploitation of donated information. Variation in trust, its relation to areas of concern about the use of genomic data and potential of legislation are considered. These findings have relevance for efforts to expand genomic medicine and data sharing beyond those with personal experience of genetics or research participants. Electronic supplementary material The online version of this article (10.1007/s00439-019-02062-0) contains supplementary material, which is available to authorized users.

وصف الملف: application/pdf; text/xml; Print-Electronic

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::0c502886a20a722a41ae8722785316eeTest
https://doi.org/10.1007/s00439-019-02062-0Test

المؤلفون: Qurratulain Hasan, Heidi C. Howard, Richard Milne, Lauren Robarts, Jack Pollard, Vigdis Stefansdottir, Vera L. Izhevskaya, Cornelia Tandre, Alexandra Soulier, Jerome Atutornu, Virginia Romano, Claire Steed, Megumi Kimura, Jonathan Roberts, Marie Rivière, Peter Goodhand, A. P. Costa, Charlotta Ingvoldstad Malmgren, Go Yoshizawa, Adrian Thorogood, Josepine Fernow, Aleksandra Jędrzejak, Brandi Leach, Torsten Heinemann, Deborah Mascalzoni, Haytham A. Sheerah, Christine Critchley, Anne V. West, Paul Bevan, Shamim Anwer, Emilia Niemiec, Maria Cerezo, Mohamed A. Almarri, Elena E. Baranova, Yali Cong, Keying Liu, Nan Wang, Erika Kleiderman, Christine Patch, Dianne Nicol, Aiko Hibino, Álvaro Mendes, Katherine I. Morley, Cao Jinhong, Gry Houeland, Jusaku Minari, S. Zakir Hussain, James Smith, Anna Middleton, Barbara Prainsack

المساهمون: Institut d'Histoire et de Philosophie des Sciences et des Techniques (IHPST), Université Paris 1 Panthéon-Sorbonne (UP1)-Centre National de la Recherche Scientifique (CNRS), DILTEC - Didactique des langues, des textes et des cultures - EA 2288 (DILTEC), Université Sorbonne Nouvelle - Paris 3, Milne, Richard [0000-0002-8770-2384], Apollo - University of Cambridge Repository

المصدر: Genome Medicine
Genome Medicine, BioMed Central, 2021, 13, pp.92. ⟨10.1186/s13073-021-00903-0⟩
Genome Medicine, BioMed Central, 2021, 13 (1), ⟨10.1186/s13073-021-00903-0⟩
Genome medicine 13, 92 (2021). doi:10.1186/s13073-021-00903-0
Genome Medicine, Vol 13, Iss 1, Pp 1-12 (2021)

مصطلحات موضوعية: Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi, 0301 basic medicine, International surveys, QH426-470, 030105 genetics & heredity, Trust, Online Systems, [SHS.HISPHILSO]Humanities and Social Sciences/History, Philosophy and Sociology of Sciences, 03 medical and health sciences, Surveys and Questionnaires, Genomic data, Genetics, Humans, Sanctions, ddc:610, Public value, Marketing, Molecular Biology, Genetics (clinical), Trustworthiness, Medicinsk genetik, [SDV.GEN]Life Sciences [q-bio]/Genetics, Relative value, [SHS.SOCIO]Humanities and Social Sciences/Sociology, Information Dissemination, Public trust, Research, Genomics, Health Care Service and Management, Health Policy and Services and Health Economy, Transparency (behavior), Genomic research, [SDV.ETH]Life Sciences [q-bio]/Ethics, 3. Good health, Data sharing, 030104 developmental biology, Data access, [SDV.GEN.GH]Life Sciences [q-bio]/Genetics/Human genetics, Ranking, Medicine, Molecular Medicine, Business, Medical Genetics

الوصف: Background Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this. Methods We analyse the ‘Your DNA, Your Say’ online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle- and high-income countries, gathered in 15 languages. We examine how participants perceived the relative value of measures to demonstrate the trustworthiness of those using donated DNA and/or medical information. We examine between-country variation and present a consolidated ranking of measures. Results Providing transparent information about who will benefit from data access was the most important measure to increase trust, endorsed by more than 50% of participants across 20 of 22 countries. It was followed by the option to withdraw data and transparency about who is using data and why. Variation was found for the importance of measures, notably information about sanctions for misuse of data—endorsed by 5% in India but almost 60% in Japan. A clustering analysis suggests alignment between some countries in the assessment of specific measures, such as the UK and Canada, Spain and Mexico and Portugal and Brazil. China and Russia are less closely aligned with other countries in terms of the value of the measures presented. Conclusions Our findings highlight the importance of transparency about data use and about the goals and potential benefits associated with data sharing, including to whom such benefits accrue. They show that members of the public value knowing what benefits accrue from the use of data. The study highlights the importance of locally sensitive measures to increase trust as genomic data sharing continues globally.

وصف الملف: application/pdf; application/zip; text/xml

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::624a25559396cd2fb1595d4e9b9e3a32Test
https://doi.org/10.1186/s13073-021-00903-0Test