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Статті в журналах з теми "Community views about consent and privacy"

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Spalding, Rachael, Emma Katz, and Barry Edelstein. "SEX IN NURSING HOMES? A PRELIMINARY ANALYSIS OF INTERVIEWS WITH COMMUNITY-DWELLING ADULTS." Innovation in Aging 3, Supplement_1 (November 2019): S853—S854. http://dx.doi.org/10.1093/geroni/igz038.3139.

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Abstract Most older adults living in long-term care settings (LTCs) indicate that expressing their sexuality is important to them (Doll, 2013). However, negative views of late-life sexuality persist in the United States (Robinson & Molzahn, 2007), particularly among nursing staff in LTCs. Staff often express discomfort regarding residents’ sexual lives (Bouman, Arcelus, & Benbow, 2007), despite the fact that LTCs are residents’ homes where private behaviors such as sexual activity might be expected to occur. Little is known about the general public’s attitudes towards sexual behaviors in LTCs. Attitudes of LTC residents’ family members is particularly important, as they are most likely to visit residents and to care about their quality of life, in turn informing facility policies and management. In this study, we took preliminary steps toward gathering this information by focusing on attitudes of community-dwelling adults. Using an iterative approach, we conducted semi-structured interviews with community-dwelling adults (n = 9; age range = 18 – 65 years) regarding their beliefs about romantic relationships and sexual behaviors among LTC residents. Major themes were identified through thematic content analysis. Participants indicated favorable attitudes towards residents’ sexual expression as a means of combatting loneliness and fostering emotional intimacy. Other themes included residents’ rights to privacy, potential risks of sexual behavior, and the need to consider how individuals may differ in their ability to consent to sexual activity. This data is intended to inform the development of a measurement tool for use with LTC residents’ family members.
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Braunack-Mayer, Annette, Belinda Fabrianesi, Jackie Street, Pauline O'Shaughnessy, Stacy M. Carter, Lina Engelen, Lucy Carolan, Rebecca Bosward, David Roder, and Kylie Sproston. "Sharing Government Health Data With the Private Sector: Community Attitudes Survey." Journal of Medical Internet Research 23, no. 10 (October 1, 2021): e24200. http://dx.doi.org/10.2196/24200.

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Background The use of government health data for secondary purposes, such as monitoring the quality of hospital services, researching the health needs of populations, and testing how well new treatments work, is increasing. This increase in the secondary uses of health data has led to increased interest in what the public thinks about data sharing, in particular, the possibilities of sharing with the private sector for research and development. Although international evidence demonstrates broad public support for the secondary use of health data, this support does not extend to sharing health data with the private sector. If governments intend to share health data with the private sector, knowing what the public thinks will be important. This paper reports a national survey to explore public attitudes in Australia toward sharing health data with private companies for research on and development of therapeutic drugs and medical devices. Objective This study aims to explore public attitudes in Australia toward sharing government health data with the private sector. Methods A web-based survey tool was developed to assess attitudes about sharing government health data with the private sector. A market research company was employed to administer the web-based survey in June 2019. Results The survey was completed by 2537 individuals residing in Australia. Between 51.8% and 57.98% of all participants were willing to share their data, with slightly fewer in favor of sharing to improve health services (51.99%) and a slightly higher proportion in favor of sharing for research and development (57.98%). There was a preference for opt-in consent (53.44%) and broad support for placing conditions on sharing health information with private companies (62% to 91.99%). Wide variability was also observed in participants’ views about the extent to which the private sector could be trusted and how well they would behave if entrusted with people’s health information. In their qualitative responses, the participants noted concerns about private sector corporate interests, corruption, and profit making and expressed doubt about the Australian government’s capacity to manage data sharing safely. The percentages presented are adjusted against the Australian population. Conclusions This nationally representative survey provides preliminary evidence that Australians are uncertain about sharing their health data with the private sector. Although just over half of all the respondents supported sharing health data with the private sector, there was also strong support for strict conditions on sharing data and for opt-in consent and significant concerns about how well the private sector would manage government health data. Addressing public concern about sharing government health data with the private sector will require more and better engagement to build community understanding about how agencies can collect, share, protect, and use their personal data.
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Panayiotou, Andrie G., and Evangelos D. Protopapadakis. "Ethical issues concerning the use of commercially available wearables in children." JAHR 13, no. 1 (August 19, 2022): 9–22. http://dx.doi.org/10.21860/j.13.1.1.

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Wearable and mobile technology has advanced in leaps and bounds in the last decade with technological advances creating a role from enhancing healthy living to monitoring and treating disease. However, the discussion about the ethical use of such commercial technology in the community, especially in minors, is lacking behind. In this paper, we first summarize the major ethical concerns that arise from the usage of commercially available wearable technology in children, with a focus on smart watches, highlighting issues around the consent process, mitigation of risk and potential confidentiality and privacy issues, as well as the potential for therapeutic misconceptions when used without medical advice. Then through a relevant thought experiment we move on to outline some further ethical concerns that are connected to the use of wearables by minors, to wit the issue of informed consent in the case of minors, forcing them to live in the spotlight, and compromising their right to an open future. We conclude with the view that mitigating potential pitfalls and enhancing the benefits of wearable technology especially for minors requires brave and comprehensive moral debates.
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Bailey, Julia V., Kirsty F. Bennett, Anasztazia Gubijev, Jill Shawe, and Judith Stephenson. "Participant views and experiences of sexual health research: The Contraception Choices online trial." DIGITAL HEALTH 7 (January 2021): 205520762110334. http://dx.doi.org/10.1177/20552076211033424.

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Background Online sexual health research can be convenient, efficient and low cost, but there are debates about the adequacy of online informed consent, privacy, and the acceptability of different methods of follow-up. Objectives To explore women's views and experiences of the Contraception Choices feasibility trial procedures and the place of digital interventions for contraception decision making. Methods We analysed data from two sources: (1) Qualitative interviews. Eighteen interviews were conducted with women who had taken part in the Contraception Choices pre-trial feasibility study, to evaluate recruitment and online trial procedures. (2) Free-text comments. Women in the main Contraception Choices randomised controlled trial were followed up at 3 and 6 months, and asked ‘Please tell us what you liked or disliked about the website’ and ‘Has being in the study had any good or bad effects on your life?’ A total of 387 and 414 comments were made at 3 and 6 months respectively. Data were analysed thematically. Results Participants liked being involved in a study about contraception, although recruitment from an abortion clinic was less acceptable than in other sexual health settings. Women found the trial procedures straightforward, and expressed no major concerns about online self-registration, informed consent or online data collection. Online survey questions about contraception and fertility were acceptable, and participants liked the convenience of being followed up by email or text. Conclusions Participants appreciated the advantages of the online research design and did not express concerns about consent or privacy. Women would welcome digital interventions for contraception in a variety of settings.
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Crow, Matthew S., Jamie A. Snyder, Vaughn J. Crichlow, and John Ortiz Smykla. "Community Perceptions of Police Body-Worn Cameras." Criminal Justice and Behavior 44, no. 4 (February 3, 2017): 589–610. http://dx.doi.org/10.1177/0093854816688037.

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Despite relatively little extant research, efforts to expand the use of body-worn cameras (BWCs) in policing are increasing. Although recent research suggests positive impacts of BWCs on reducing police use-of-force and citizen complaints, little is known about community members’ perceptions of BWCs. The current study examined perceptions of residents of two Florida counties and found a large majority of respondents supported the use of BWCs. Structural equation modeling was utilized to examine factors that influence views of BWCs. Findings indicate that positive perceptions of police performance and more police interaction were associated with greater perceived benefits of BWCs, whereas concerns about the privacy reduced perceived BWC benefits. Respondents’ views of procedural fairness and crime concern were indirectly related to perceptions BWC benefits. Non-White and younger respondents were indirectly less likely to perceive benefits. Implications of these findings and future directions for research are discussed.
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Kim, Katherine K., Jill G. Joseph, and Lucila Ohno-Machado. "Comparison of consumers’ views on electronic data sharing for healthcare and research." Journal of the American Medical Informatics Association 22, no. 4 (March 31, 2015): 821–30. http://dx.doi.org/10.1093/jamia/ocv014.

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Abstract New models of healthcare delivery such as accountable care organizations and patient-centered medical homes seek to improve quality, access, and cost. They rely on a robust, secure technology infrastructure provided by health information exchanges (HIEs) and distributed research networks and the willingness of patients to share their data. There are few large, in-depth studies of US consumers’ views on privacy, security, and consent in electronic data sharing for healthcare and research together. Objective This paper addresses this gap, reporting on a survey which asks about California consumers’ views of data sharing for healthcare and research together. Materials and Methods The survey conducted was a representative, random-digit dial telephone survey of 800 Californians, performed in Spanish and English. Results There is a great deal of concern that HIEs will worsen privacy (40.3%) and security (42.5%). Consumers are in favor of electronic data sharing but elements of transparency are important: individual control, who has access, and the purpose for use of data. Respondents were more likely to agree to share deidentified information for research than to share identified information for healthcare (76.2% vs 57.3%, p < .001). Discussion While consumers show willingness to share health information electronically, they value individual control and privacy. Responsiveness to these needs, rather than mere reliance on Health Insurance Portability and Accountability Act (HIPAA), may improve support of data networks. Conclusion Responsiveness to the public’s concerns regarding their health information is a pre-requisite for patient-centeredness. This is one of the first in-depth studies of attitudes about electronic data sharing that compares attitudes of the same individual towards healthcare and research.
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Abadie, Roberto, Celia Fisher, and Kirk Dombrowski. "“He's under oath”: Privacy and Confidentiality Views Among People Who Inject Drugs Enrolled in a Study of Social Networks and Human Immunodeficiency Virus/Hepatitis C Virus Risk." Journal of Empirical Research on Human Research Ethics 16, no. 3 (March 26, 2021): 304–11. http://dx.doi.org/10.1177/15562646211004411.

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Despite the promise of social network research, this method raises important ethical questions regarding privacy and confidentiality. Although researchers and bioethicists have considered research obligations in relation to marginal or vulnerable populations, the views of people who inject drugs (PWIDs) have not been sufficiently considered. To elicit participants’ views of research obligations, we conducted in-depth interviews with a subset ( n = 40) of active PWIDs enrolled in a large social network study. Findings suggest participants have an expectation of confidentiality but believe this obligation need not be absolute and can be waived if a participant violates community norms or place others at risk. Ethics boards should recognize that marginalized populations are able to articulate complex moral views about privacy and confidentiality. Engaging participants in dialogue about the responsible conduct of research presents an opportunity to correct under- or overestimations of research vulnerabilities when such decisions are restricted to the perspectives of investigators or Institutional Review Board members.
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Alshehri, Ahmed, Joseph Spielman, Amiya Prasad, and Chuan Yue. "Exploring the Privacy Concerns of Bystanders in Smart Homes from the Perspectives of Both Owners and Bystanders." Proceedings on Privacy Enhancing Technologies 2022, no. 3 (July 2022): 99–119. http://dx.doi.org/10.56553/popets-2022-0064.

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Smart home IoT devices collect data not only from owners of the devices, but also from bystanders in a smart home (e.g., visiting family members, friends, or domestic workers). Existing research mainly considered the privacy concerns of bystanders from their own perspectives. In this paper, we design and conduct a survey study to more comprehensively explore the privacy concerns of bystanders from the perspectives of both owners and bystanders. For owners, we investigate their understanding of their own data practices, their views on bystanders’ privacy, and their willingness to negotiate data practices with bystanders. For bystanders, we investigate their privacy concerns, their expectations of disclosures by owners, and their willingness to share their data with owners. We recruited 200 owners and 100 bystanders. We found that most owners of smart homes recognize the privacy rights of bystanders, do not fully understand their own data practices, and are willing to address the privacy concerns of trusted bystanders. We also found that most bystanders have concerns about their privacy in other people’s smart homes, do not expect owners to disclose data practices, and are willing to share data about them with owners if they consent. Reaching a temporary agreement about data practices between owners and bystanders might require some negotiation. So, we also explore the willingness of owners and bystanders on negotiating data collection, storage, and sharing in smart homes. We found that many owners and bystanders have different preferences regarding negotiating data practices. Based on our findings, we provide recommendations for enhancing the privacy protection in smart homes.
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Fairchild, Amy L. "Objective monitoring of mosquito bednet usage and the ethical challenge of privacy revelations about study bystanders: Ethical analysis." Clinical Trials 16, no. 5 (August 1, 2019): 469–72. http://dx.doi.org/10.1177/1740774519865869.

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Clinical trials and public health surveillance of bednet use for malaria prevention involve the ongoing collection of sensitive data from private settings. This article discusses risks to bystanders, who have not consented to participating in surveillance or research, but whose behavior may nevertheless be recorded. In the case of clinical trials, community consultation and consent processes are one well-accepted way to address potential risk to bystanders. I argue that the intrusive monitoring required by some bednet trials may render this type of consent insufficient. In these cases, either bystanders should be enrolled as participants and give consent or less intrusive monitoring methods should be used. Validated monitoring methods should also have relevance for practice beyond use in a clinical trial. Considering the global impact of malaria, applying these methods to public health surveillance would be a practical use. Existing justifications for surveillance without consent, which sometimes result in coercive public health measures, could apply to the case of bednets. Particularly in cases where there is the potential for harm to others, individuals who were not the original subjects of disease reporting are often caught in the surveillance net. Although an argument can be made that malaria meets this bar, considerations of feasibility, sustainability, and trust make intrusive surveillance unsustainable in the case of a daily, lifelong behavior such as bednet use.
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Levesque, Sebastian, Thomas M. Polasek, Eric Haan, and Sepehr Shakib. "Attitudes of healthy volunteers to genetic testing in phase 1 clinical trials." F1000Research 10 (March 30, 2021): 259. http://dx.doi.org/10.12688/f1000research.26828.1.

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Background: Genetic testing in clinical trials introduces several ethical and logistical issues to discuss with potential participants when taking informed consent. The aim of this study was to explore the attitudes of healthy volunteers in phase 1 studies to the topics of genetic security, genetic privacy and incidental genetic findings. Methods: Healthy volunteers presenting for screening appointments at a phase 1 clinical trial unit (CMAX Clinical Research, Adelaide, Australia) took an anonymous paper survey about genetic testing. Results: There were 275 respondents to the survey. The mean age was 27 years (range 18-73); 54% were male and 53% were of North/Western European ethnicity. Just over half the healthy volunteers thought genetic security (56%) and genetic privacy (57%) were “important” or “very important”. However, the security of their genetic information was ranked less important than other personal information, including mobile phone number, internet browser search history and email address. Two-thirds of respondents would trade genetic privacy for re-identifiability if information relevant to their health were discovered by genetic testing. Healthy volunteers favoured the return of incidental genetic findings (90% indicated this was “important” or “very important”). A level of risk (10 to 90%) for developing a serious medical condition that would “trigger” the return of incidental genetic findings to participants was not identified. Conclusions: Healthy volunteers screening for phase 1 clinical trials have mixed views about the importance of genetic security and genetic privacy, but they strongly favour the return of incidental genetic findings that could affect their health. These issues should be discussed with potential participants during informed consent for phase 1 clinical trials with genetic testing.
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Дисертації з теми "Community views about consent and privacy"

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Xafis, Vicki. "The ethical, legal, and social acceptability of health data linkage in the Australian context: an investigation of current practices, perceptions, and public attitudes." Thesis, 2013. http://hdl.handle.net/2440/96171.

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Vast collections of electronic data are held by a variety of health organisations, including government and non-government agencies, hospitals and universities. Data linkage involves combining such data sets for secondary purposes such as population health research. Data linkage currently occurs in Australia and is rapidly developing into a key tool both for Government and researchers. There are considerable benefits to data linkage, including the ability to conduct high quality research which may lead to advances in clinical practice, the development of public health policy, the prevention of disease, the conduct of public health surveillance. However, the associated ethical and legal issues require analysis and consideration to determine the moral and legal ramifications of such uses of data and so that indeterminate ethical and legal issues do not restrict agencies’ and researchers’ ability to fully support a co-ordinated national approach to data linkage. Lagging substantially behind recent developments in Australia and internationally is knowledge and clarity about the public’s acceptance of data linkage practices. This thesis presents findings of a multi-phase project comprising a theoretical component and two empirical studies. The theoretical component examines the ethical, legal and social acceptability of data linkage (Phase 1), and two empirical components (Phases 2 and 3) present the views of community members about data linkage. In Phase 1 I argue that the non-consensual use of data is morally acceptable under certain conditions. It is currently legally acceptable in Australia despite certain impediments arising from the strict interpretation and complexity of Australian privacy legislation, an issue which is currently being addressed through amendments to the Australian Commonwealth privacy legislation. Phase 2 comprised in-depth face-to-face interviews to determine participant views in relation to privacy and their preferred consent options in four hypothetical data linkage scenarios. Phase 3 involved the administration of a questionnaire before and after a citizens’ jury to gauge, amongst other issues, these citizens’ attitudes to health data linkage and to determine whether the provision of detailed information about the data linkage process, as well as the ethical and legal issues it raises, had an impact on previously held views and perceptions. Participants quickly acquired an understanding of data linkage. They generally supported the non-consensual use of data provided that there were protection mechanisms in place such as the removal of identifiable data. Most participants believed that consent should be sought for data linkage projects if the linkage were being conducted by researchers with fully identifiable data. Participants weighed up opposing values such as the need for privacy against the potential benefits arising from data linkage research using an informal moral reasoning framework. The wealth of justifications for their decisions highlighted the participants’ values. This research aims to contribute to the Australian and international literature at a time when this method of combining data is being considered by researchers world-wide. In addition, the findings will assist in discussions and activities in relation to the development of the national data linkage framework, a key Australian Government research target within the next five to ten years.
Thesis (Ph.D.) -- University of Adelaide, School of Population Health and School of Paediatrics and Reproductive Health, 2013
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Частини книг з теми "Community views about consent and privacy"

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Paquette, Erin Talati, and Lainie Friedman Ross. "Involving Parents and Children in Community-Engaged Research." In Ethics and Research with Children, 206–26. Oxford University Press, 2018. http://dx.doi.org/10.1093/med-psych/9780190647254.003.0012.

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Stakeholder engagement in research is increasingly relied upon for its potential to increase the relevance of research, improve transparency of the research process, and translate evidence into practice. Engaging communities in research provides research teams with unique views into the needs, interests, and skills of public stakeholders including healthy volunteers, advocacy groups, patient groups, and their families and/or caregivers. This chapter considers key ethical considerations for researchers contemplating community-engaged research, including how to think about protection of human subjects and privacy, concerns regarding conflicts of interest and group harms, and compensation in community-engaged research. These concerns are heightened and further complicated in community-engaged pediatric research because of the additional vulnerabilities of children. In the pediatric setting, the scope of child participation, consent, and compensation deserve special attention, with respect to and for the evolving but not yet fully developed moral agency of children.
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Gandy Jr., Oscar H. "Relationships and Expectations." In The Panoptic Sort, 147–62. Oxford University Press, 2021. http://dx.doi.org/10.1093/oso/9780197579411.003.0006.

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This chapter is focused on the perceptions of the public about the panoptic sort and its likely influence on society. Although the focus within the scholarly community was on surveillance, the term was not in broad use within the population, and as a result, estimates of public opinion at the time were limited to a focus on privacy as an issue of public concern. A broad variety of issues and concerns were explored in previously published and specially designed surveys of the U.S. public. The approach taken to understand the views of the public was shaped by the analysis of a series of focus group interviews that are described within this chapter. In addition to seeking discussants’ understanding of the generation and use of consumer and citizen profiles, the members of these focus groups were also invited to share their views about the kinds of limits they thought needed to be established to govern the use of profiling technologies. Of particular importance were their views about the sharing of personal and transaction-generated information with third parties. Most of these focus group members were quite knowledgeable about marketing activities, and only a small minority expressed strong criticism of their use.
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Тези доповідей конференцій з теми "Community views about consent and privacy"

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Vlašković, Veljko. "OSVRT NA PRAVA DECE SA INVALIDITETOM SA TEŽIŠTEM NA PRISTUP ZDRAVSTVENIM USLUGAMA." In XVII majsko savetovanje. Pravni fakultet Univerziteta u Kragujevcu, 2021. http://dx.doi.org/10.46793/uvp21.569v.

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It is no coincidence that the UN Convention on the Rights of Persons with Disabilities is the first international human rights treaty in the 21st century. The Convention seeks to amend the social and legal status of persons with disabilities, including children, in a revolutionary way. The main goal is to remove social barriers by adopting a social model of disability in recognizing and exercising the human rights of persons with disabilities on an equal basis with other persons. Therefore, it is understandable that the rules of earlier international human rights treaties, such as the UN Convention on the Rights of the Child or the European Convention on Human Rights, are beginning to be directly adjusted to the this Convention. From the aspect of recognition and exercising of the rights of children with disabilities, the issue of accessibility to health care services is especially important. It insists on the application of the principles of reasonable accommodation, accessibility and non-discrimination so that children with disabilities have access to health care facilities on an equal basis with other children. This implies significant involvement of the state, local community and family in order to remove social and infrastructural barriers. Furthermore, the UN Committee on the Rights of Persons with Disabilities calls for an absolute ban on the forced detention and placement of children in health care facilities, while there is a very negative attitude towards the care of children with disabilities in social protection institutions. In this regard, an amendment to the domestic Law on the Protection of Persons with Mental Disabilities is required. According to the social model of disability, the family environment with the appropriate and effective support of the local community is a necessary environment for the realization of the rights of children with disabilities. When it comes to the consent of a child with a disability to a medical treatment, it is necessary to determine the child's capability to form views, as in the case of other children. In that sense, the mentioned child should be provided with appropriate assistance and support to express his / her views. This support consists primarily in the way in which the child is informed about the proposed medical treatment.
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Звіти організацій з теми "Community views about consent and privacy"

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Agrawal, Asha Weinstein, and Hilary Nixon. What Do Americans Think About Federal Tax Options to Support Transportation? Results from Year Twelve of a National Survey. Mineta Transportation Institute, June 2021. http://dx.doi.org/10.31979/mti.2021.2101.

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This report summarizes the results from the twelfth year of a national public opinion survey asking U.S. adults questions related to their views on federal transportation taxes. A nationally-representative sample of 2,516 respondents completed the online survey from February 5 to 23, 2021. The questions test public opinions about raising the federal gas tax rate, replacing the federal gas tax with a new mileage fee, and imposing a mileage fee just on commercial travel. In addition to asking directly about support for these tax options, the survey collected data on respondents’ views on the quality of their local transportation system, their priorities for federal transportation spending, their knowledge about gas taxes, their views on privacy and equity matters related to mileage fees, travel behavior, and standard sociodemographic variables. This large set of variables is used to identify personal characteristics and opinions correlated with support for the tax options. Key findings include that large majorities supported transportation improvements across modes and wanted to see the federal government work towards making the transportation system well maintained, safe, and equitable, as well as to reduce the system’s impact on climate change. Findings related to gas taxes include that only 2% of respondents knew that the federal gas tax rate had not been raised in more than 20 years, and 71% of respondents supported increasing the federal gas tax by 10 cents per gallon if the revenue would be dedicated to maintenance. With respect to mileage fees, roughly half of respondents supported some form of mileage fee, whether that was assessed on all travel or just on commercial travel, 62% believe that low-income drivers should pay a reduced mileage fee rate, and 52% think that electric vehicles should pay a lower rate than gas and diesel vehicles. The analysis of trends across the survey series, which has run from 2010 to 2011, shows that support for both higher gas taxes and a hypothetical new mileage fee has risen slowly but steadily, and Americans’ experience with COVID over the past year has not disrupted those trends. Finally, support for the tax and fee options varies mostly by most personal characteristics, but there are frequently large differences correlated with age, community type, and political affiliation.
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