scholarly journals A deliberative study of public attitudes towards sharing genomic data within NHS genomic medicine services in England

2020 ◽  
Vol 29 (7) ◽  
pp. 702-717
Author(s):  
Lamiece Hassan ◽  
Ann Dalton ◽  
Carrie Hammond ◽  
Mary Patricia Tully
Keyword(s):  
Public Attitudes ◽  
Clinical Care ◽  
Genomic Medicine ◽  
Genomic Data ◽  
Routine Care ◽  
Service Development ◽  
The Public ◽  
Research Activities ◽  
Share Data

Whole genome (DNA) sequencing is becoming part of routine care healthcare in England. Genomic data are most useful when pooled with other patients’ data, meaning that clinicians may need to share data to effectively treat patients. We ran deliberative focus groups to explore views among 44 patients and members of the public about proposals for wider genomic data sharing for clinical care. Participants were briefed about genomic medicine and engaged in group and individual exercises to deliberate on the benefits and risks of using genomic data. Findings showed that participants supported wider sharing of genomic data within health services and naturally linked care and research activities. Nonetheless, they were concerned about managing flows of information to protect patient confidentiality and guard against unauthorised uses, now and over the long-term. Ongoing conversations with the public are needed to determine appropriate uses of genomic data and safeguards to inform service development.

scholarly journals Identifying Aspects of Public Attitudes Toward Whole Genome Sequencing to Inform the Integration of Genomics into Care

2021 ◽  
pp. 1-12
Author(s):  
Holly Etchegary ◽  
Daryl Pullman ◽  
Charlene Simmonds ◽  
Zoha Rabie ◽  
Proton Rahman
Keyword(s):  
Whole Genome Sequencing ◽  
Genome Sequencing ◽  
Online Survey ◽  
Public Attitudes ◽  
Genetic Counselor ◽  
Genomic Medicine ◽  
Genomic Data ◽  
Whole Genome ◽  
The Public ◽  
Genomic Test

<b><i>Introduction:</i></b> The growth of global sequencing initiatives and commercial genomic test offerings suggests the public will increasingly be confronted with decisions about sequencing. Understanding public attitudes can assist efforts to integrate sequencing into care and inform the development of public education and outreach strategies. <b><i>Methods:</i></b> A 48-item online survey was advertised on Facebook in Eastern Canada and hosted on SurveyMonkey in late 2018. The survey measured public interest in whole genome sequencing and attitudes toward various aspects of sequencing using vignettes, scaled, and open-ended items. <b><i>Results:</i></b> While interest in sequencing was high, critical attitudes were observed. In particular, items measuring features of patient control and choice regarding genomic data were strongly endorsed by respondents. Majority wanted to specify upfront how their data could be used, retain the ability to withdraw their sample at a later date, sign a written consent form, and speak to a genetic counselor prior to sequencing. Concerns about privacy and unauthorized access to data were frequently observed. Education level was the sociodemographic variable most often related to attitude statements such that those with higher levels of education generally displayed more critical attitudes. <b><i>Conclusions:</i></b> Attitudes identified here could be used to inform the development of implementation strategies for genomic medicine. Findings suggest health systems must address patient concerns about privacy, consent practices, and the strong desire to control what happens to their genomic data through public outreach and education. Specific oversight procedures and policies that are clearly communicated to the public will be required.

scholarly journals Findings from the Section on Bioinformatics and Translational Informatics

2016 ◽  
Vol 25 (01) ◽  
pp. 207-210
Author(s):  
T. Lecroq ◽  
H. Dauchel ◽  
Keyword(s):  
Large Scale ◽  
Clinical Care ◽  
Genomic Medicine ◽  
Genomic Data ◽  
Evaluation Process ◽  
The Cancer Genome Atlas ◽  
Sub Saharan Africa ◽  
Health Domain ◽  
Research Activities ◽  
Translational Informatics

Summary Objectives : To summarize excellent current research and propose a selection of best papers published in 2015 in the field of Bioinformatics and Translational Informatics with application in the health domain and clinical care. Method : We provide a synopsis of the articles selected for the IMIA Yearbook 2016, from which we attempt to derive a synthetic overview of current and future activities in the field. As last year, a first step of selection was performed by querying MEDLINE with a list of MeSH descriptors completed by a list of terms adapted to the section. Each section editor has evaluated separately the set of 1,566 articles and the evaluation results were merged for retaining 14 articles for peer-review. Results : The selection and evaluation process of this Yearbook's section on Bioinformatics and Translational Informatics yielded four excellent articles focusing this year on data management of large-scale datasets and genomic medicine that are mainly new method-based papers. Three articles explore the high potential of the re-analysis of previously collected data, here from The Cancer Genome Atlas project (TCGA) and one article presents an original analysis of genomic data from sub-Saharan Africa populations. Conclusions : The current research activities in Bioinformatics and Translational Informatics with application in the health domain continues to explore new algorithms and statistical models to manage and interpret large-scale genomic datasets. From population wide genome sequencing for cataloging genomic variants to the comprehension of functional impact on pathways and molecular interactions regarding a given pathology, making sense of large genomic data requires a necessary effort to address the issue of clinical translation for precise diagnostic and personalized medicine.

scholarly journals Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia

2019 ◽  
Vol 138 (11-12) ◽  
pp. 1237-1246 ◽  
Author(s):  
Richard Milne ◽  
◽  
Katherine I. Morley ◽  
Heidi Howard ◽  
Emilia Niemiec ◽  
...  
Keyword(s):  
Data Sharing ◽  
General Public ◽  
Personal Experience ◽  
Online Survey ◽  
Latent Class ◽  
Public Attitudes ◽  
Genomic Medicine ◽  
Genomic Data ◽  
Cross Sectional ◽  
The Usa

Abstract 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.

scholarly journals Responsibilization and Sexual Stigma Under Austerity: Surveying Public Support for Government-Funded PrEP in England

2019 ◽  
Vol 17 (4) ◽  
pp. 643-653
Author(s):  
Timothy Hildebrandt ◽  
Leticia Bode ◽  
Jessica S. C. Ng
Keyword(s):  
Public Opinion ◽  
Public Attitudes ◽  
Public Support ◽  
Policy Implications ◽  
The Public ◽  
Sexual Stigma ◽  
The Government ◽  
Original Survey ◽  
Media Narratives

Abstract Introduction Under austerity, governments shift responsibilities for social welfare to individuals. Such responsibilization can be intertwined with pre-existing social stigmas, with sexually stigmatized individuals blamed more for health problems due to “irresponsible” sexual behavior. To understand how sexual stigma affects attitudes on government healthcare expenditures, we examine public support for government-provisioned PrEP in England at a time when media narratives cast the drug as an expensive benefit for a small, irresponsible social group and the National Health Service’s long-term sustainability was in doubt. Methods This paper uses data from an original survey (N = 738) conducted in September 2016, when public opinion should be most sensitive to sexual stigma. A survey experiment tests how the way beneficiaries of PrEP were described affected support for NHS provision of it. Contrary to expectations, we found that support was high (mean = 3.86 on a scale of 1 to 5) irrespective of language used or beneficiary group mentioned. Differences between conditions were negligible. Discussion Sexual stigma does not diminish support for government-funded PrEP, which may be due to reverence for the NHS; resistance to responsibilization generally; or just to HIV, with the public influenced by sympathy and counter-messaging. Social policy implications Having misjudged public attitudes, it may be difficult for the government to continue to justify not funding PrEP; the political rationale for contracting out its provision is unnecessary and flawed. With public opinion resilient to responsibilization narratives and sexual stigma even under austerity, welfare retrenchment may be more difficult than social policymakers presume.

scholarly journals Research activities in public libraries-findings from fieldwork: Facts and methods

2013 ◽  
Vol 22 (71) ◽  
pp. 15-23
Author(s):  
Deborah Goodall
Keyword(s):  
Public Libraries ◽  
Comparative Method ◽  
Public Library ◽  
Research Capacity ◽  
Service Development ◽  
Research Activity ◽  
The Public ◽  
Research Activities ◽  
Library Research ◽  
The Social

Reports current research activities in public library services drawing from a series of interviews with 20 chief librarians. Findings reinforce earlier perceptions and findings about public library research activities. Of particular concern is the fact that research activity and method is largely confined to'simpler' issues of operational service development and does not extend to 'harder' research addressing the social and economic impact of the service. To assess trustworthiness and make best use of the data the interview transcripts are analysed using three techniques: initial data analysis by coding down, dilemma analysis, and intensive analysis carried out using the constant comparative method. Concludes that the restricted research capacity within the public library sector may endanger the realisation of its strategic potential.

scholarly journals Using Population-Level Data to Assess Need for and Use of Long-Term Services and Supports in California

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 504-504
Author(s):  
Kathryn Kietzman ◽  
Lei Chen ◽  
Rebecca Allen
Keyword(s):  
Service Use ◽  
Population Level ◽  
Routine Care ◽  
California Health Interview Survey ◽  
Care Needs ◽  
Level Data ◽  
Share Data ◽  
Report Data ◽  
Services And Supports

Abstract In response to aging and disability stakeholder advocacy in California, the state’s 2018-19 budget included support for the development of a study of Californians with needs for long-term services and supports (LTSS). Existing data on LTSS most typically represents those who already use specific programs or services. Yet many programs do not uniformly collect and report data, or have little capacity to share data across different delivery systems. In response to these gaps, we developed a 15-minute follow-on survey to the 2019-2020 California Health Interview Survey (CHIS), gathering statewide population-level data to assess LTSS needs and use by Californians 18 years of age and older. This paper reports on preliminary findings from the 2019 CHIS-LTSS survey conducted with a sample of 1097 respondents. Screening questions identified respondents reporting difficulties with concentrating, remembering, or making decisions (60%), performing basic daily activities such as dressing or bathing (26%), or getting out of the house to shop or to see the doctor (52%). Nearly half of respondents (45%) reported needing help with routine care needs while 16% needed help with personal care needs. Additional findings illustrate specific LTSS needs, service use, consequences of unmet needs, financial concerns, and consumer experiences. At a time when California policy makers, program planners, and advocates are engaged in implementing a 10-year Master Plan for Aging, these findings can be used to identify and address gaps in the types of services and supports that are essential to meet the LTSS needs of older adults and people with disabilities.

Rapid Ethnography and a Knowledge Mobilization Project

2018 ◽  
Author(s):  
Donna Baines ◽  
Rachel Gnanayutham
Keyword(s):  
Social Change ◽  
Knowledge Translation ◽  
Public Discourse ◽  
Knowledge Mobilization ◽  
The Public ◽  
Research Activities ◽  
Public Media ◽  
Dissemination Of Research ◽  
Research Findings

Knowledge mobilization (KM) or knowledge translation (KT) involves the dissemination of research findings to diverse audiences. This chapter reflects on the challenges of KM when impacts are likely to be diffuse, nonlinear, far-reaching and long-term, such as shifting public discourse and government priorities, rather than small, immediate, easily measured, technical impacts. Drawing on one of the project’s knowledge transfer initiatives known as the bookette (a short, accessible, multiformat book and book launches aimed at the public, media, and policymakers), the chapter argues that this strategy put findings into a range of people’s hands quickly, while leaving room for further KM activities as the project continued. The chapter considers the importance of team-based research and KM as research activities that extend and deepen the capacity of researchers, research partners, and the community to pursue social change. Strengths and challenges of team-based rapid ethnography are discussed in light of these challenges.

scholarly journals A Magyar Genomikai Egészségtárház az egészséges hosszú élet kutatásának szolgálatában

2021 ◽  
Vol 162 (27) ◽  
pp. 1079-1088
Author(s):  
Vera Várhegyi ◽  
Viktor Molnár ◽  
András Gézsi ◽  
Péter Sárközy ◽  
Péter Antal ◽  
...  
Keyword(s):  
Data Warehouse ◽  
Genomic Medicine ◽  
Genomic Data ◽  
Inherited Disorders ◽  
Phenotype Data ◽  
Related Phenotype ◽  
Long Time ◽  
Successful Approach ◽  
Set Up

Összefoglaló. A fejlett társadalmak egészségügyi rendszereinek legnagyobb kihívását az öregedéssel összefüggő, korfüggő betegségek jelentik. Annak megértéséhez, hogy az egyes genetikai variánsoknak mi a szerepük egy korfüggő betegség kialakulásában, meg kell ismerkednünk magával az öregedési folyamattal, az egészséges hosszú élettel asszociált, valamint az adott populációra jellegzetes variánsokkal is. A Semmelweis Egyetem Genomikai Medicina és Ritka Betegségek Intézete a Nemzeti Bionika Program keretén belül a Magyar Genomikai Egészségtárház felállítását tűzte ki célul, időskoruk mellett is egészséges önkéntesek teljesgenom-szekvenciáinak és kapcsolódó fenotípusadatainak katalogizálásával és elemzésével, létrehozva az első magyar teljes genomi referencia-adatbázist. Fontos szempont volt, hogy a kutatás az egészséges öregedést vizsgáló nemzetközi projektekhez is kapcsolódást biztosítson, így lehetőséget teremtve a különböző országokból származó adatok harmonizálására és közös elemzésére. A kutatás résztvevőinek 49%-a 70–80 éves, 36%-a 81–90 éves, 14%-uk pedig 90 év feletti; a nemek aránya 44/56%-os megoszlást mutatott a férfiak és a nők között. A résztvevők csaknem fele (46%) egyedül él. Magas a felsőfokú végzettségűek aránya (46%), a résztvevők 61%-a hosszú időn át sportolt, 70%-uk sosem dohányzott. A vizsgálati alanyok szülei is magas életkort éltek meg, az édesapáknál 74,3, az édesanyák esetében pedig 80,47 év volt a halálozáskori átlagéletkor. Adattárházunk elsőként tervez hozzáférést biztosítani egy magyar teljes genomi referencia-adatbázishoz, amely a genetikusan meghatározott betegségek és fenotípusok kutatásában és a klinikai gyakorlatban is alapvető fontosságú. A projekt bioinformatikai fejlesztései a genetikai/genomikai információk többszintű elérését támogatják a személyes adatok védettségét megőrző statisztikai elemzési és mesterségesintelligencia-eljárások segítségével. Orv Hetil. 2021; 162(27): 1079–1088. Summary. Genetics has proven to be a a successful approach in the study of ageing. To understand the role of each genetic variant in the development of an age-dependent disease, we need to become familiar with the ageing process itself and with the population-specific variants. The Institute of Genomic Medicine and Rare Disorders of the Semmelweis University within the framework of the National Bionics Program set up a data collection, the Hungarian Genomic Data Warehouse, by cataloging and analyzing complete genome sequences and related phenotype data of healthy volunteers, which also serves as a reference national Hungarian genomic database. The structure of the data warehouse allows interoperability with the most important international research projects on ageing. 49% of the participants in the Hungarian Genomic Data Warehouse were 70–80 years old, 36% were 81–90, 14% over 90 years old. The gender ratio was 44/56% between men and women. The proportion of people with higher education is high (46%), 61% of the participants played sports for a long time, and 70% never smoked. The parents of the participants also lived a high age, with an average age at death of 74.3 years for fathers and 80.47 years for mothers. The Hungarian Genomic Data Warehouse can provide vital and timely support in personalized medicine, especially in the research and diagnosis of genetically inherited disorders. The long-term goal of these bioinformatic developments is to provide access at multiple levels to the genomic data using privacy-preserving data analysis methods in genomics. Orv Hetil. 2021; 162(27): 1079–1088.

Trust in the Police: Cross-country Comparisons

2012 ◽  
pp. 24-47
Author(s):  
V. Gimpelson ◽  
G. Monusova
Keyword(s):  
Public Opinion ◽  
Public Attitudes ◽  
Crime Rates ◽  
Authoritarian Regimes ◽  
Data Sets ◽  
The Public ◽  
Positive Attitudes ◽  
Cross Country ◽  
Police Activity

Using different cross-country data sets and simple econometric techniques we study public attitudes towards the police. More positive attitudes are more likely to emerge in the countries that have better functioning democratic institutions, less prone to corruption but enjoy more transparent and accountable police activity. This has a stronger impact on the public opinion (trust and attitudes) than objective crime rates or density of policemen. Citizens tend to trust more in those (policemen) with whom they share common values and can have some control over. The latter is a function of democracy. In authoritarian countries — “police states” — this tendency may not work directly. When we move from semi-authoritarian countries to openly authoritarian ones the trust in the police measured by surveys can also rise. As a result, the trust appears to be U-shaped along the quality of government axis. This phenomenon can be explained with two simple facts. First, publicly spread information concerning police activity in authoritarian countries is strongly controlled; second, the police itself is better controlled by authoritarian regimes which are afraid of dangerous (for them) erosion of this institution.

A Subtle but Intractable Problem? Public Attitudes to Sectarianism in 2014

2015 ◽  
Vol 24 (3) ◽  
pp. 266-287 ◽  
Author(s):  
Rachel Ormston ◽  
John Curtice ◽  
Stephen Hinchliffe ◽  
Anna Marcinkiewicz
Keyword(s):  
Public Opinion ◽  
Public Attitudes ◽  
Evidence Base ◽  
Social Attitudes ◽  
The Public ◽  
Public Beliefs ◽  
Intractable Problem ◽  
Robust Evidence

Discussion of sectarianism often focuses on evidence purporting to show discriminatory behaviour directed at Catholics or Protestants in Scotland. But attitudes also matter – in sustaining (or preventing) such discriminatory behaviours, and in understanding the nature of the ‘problem of sectarianism’ from the perspective of the Scottish public. This paper uses data from the Scottish Social Attitudes survey 2014. The survey fills a gap in the evidence base by providing robust evidence on what the public actually thinks about sectarianism in modern Scotland. It assesses public beliefs about the extent and nature of sectarianism and its perceived causes. Tensions in public opinion and differences in the attitudes of different sections of Scottish society are explored.

Sign in / Sign up

Export Citation Format

Share Document