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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.
Повний текст джерелаАнотація:
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.
Повний текст джерелаАнотація:
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.
Повний текст джерелаАнотація:
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.
Повний текст джерелаАнотація:
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.
Повний текст джерелаАнотація:
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.
Повний текст джерелаАнотація:
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.
Повний текст джерелаАнотація:
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.
Повний текст джерелаАнотація:
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.
Повний текст джерелаАнотація:
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.
Повний текст джерелаАнотація:
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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Somerville, Margaret A. "“Doing Ethics” in the Context of Sharing Patients' Personal Health Information." Canadian Journal on Aging / La Revue canadienne du vieillissement 23, no. 3 (2004): 197–202. http://dx.doi.org/10.1353/cja.2004.0037.
Повний текст джерелаАнотація:
ABSTRACTThere are at present two inconsistencies with respect to the sharing of personal health information (PHI) among health care professionals caring for a patient whom the information concerns. First, there is an inconsistency between what is in theory the ethics and law governing the confidentiality and privacy of this information—it may only be disclosed with informed consent—and what is the actual practice of health care professionals—they share it without such consent. Second, there is an inconsistency between what ethics and law demand in theory and what all parties want: They all approve of the current practice. Ethics and law can be brought into line with what is needed to act in the patient's best interests and with what people want, without opening up any serious potential for abuse of privacy and confidentiality, by establishing a safeguarded, provision-of-care exception that allows co-caring health care professionals to share patients' PHI. The requirements for a system establishing such safeguards are proposed. The basic governing presumption is respect for the person and for rights to autonomy, self-determination, privacy, and confidentiality. Therefore, disclosure may only be made with the informed consent of the competent person to whom the information pertains, unless a defence of necessity applies. Where there is doubt about someone's competence, there should likewise be doubt about disclosure without that person's informed consent. Where the person is incompetent, such a disclosure can be made to the patient's substitute decision makers, most often the family, if that is necessary for the care of the patient and in the patient's best interests. To the extent possible, consistent with the best interests of the patient, the wishes of incompetent people should be respected.
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Wong, Deanne, and Sebastian Morgan-Lynch. "Patient portals and young people: addressing the privacy dilemma of providing access to health information." Journal of Primary Health Care 9, no. 4 (2017): 240. http://dx.doi.org/10.1071/hc17037.
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ABSTRACT Patient portals enable people to access their health information electronically, but concerns about confidentiality and privacy breaches, particularly for young people, may be impeding portal adoption in New Zealand. This paper considers the legal and ethical framework relating to health information privacy and informed consent in New Zealand, and proposes an approach to implementing patient portals for young people. Shared portal access (where both a young person and their parent or guardian have access to the young person’s portal) may be appropriate for young children whose parents or guardians are responsible for their health care. However, as children mature and their capacity to make health care decisions increases, general practitioners will need to consider shifting to independent portal access by competent young people. The circumstances of each young person, including their best interests and rights, cultural needs and their views on information disclosure should be taken into account.
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El Morr, Christo, Catherine Maule, Iqra Ashfaq, Paul Ritvo, and Farah Ahmad. "Design of a Mindfulness Virtual Community: A focus-group analysis." Health Informatics Journal 26, no. 3 (November 11, 2019): 1560–76. http://dx.doi.org/10.1177/1460458219884840.
Повний текст джерелаАнотація:
Mental illnesses are on the rise on campuses worldwide. There is a need for a scalable and economically sound innovation to address these mental health challenges. The aim of this study was to explore university students’ needs and concerns in relation to an online mental health virtual community. Eight focus groups ( N = 72, 55.6% female) were conducted with university students aged 18–47 (mean = 23.38, SD = 5.82) years. Participants were asked about their views in relation to online mental health platform. Three major themes and subthemes emerged: (1) perceived concerns: potential loss of personal encounter and relationships, fear of cyber bullying, engagement challenge, and privacy and distraction; (2) perceived advantages: anonymity and privacy, convenience and flexibility, filling a gap, and togetherness; and (3) desired features: user-centered design, practical trustworthy support, and online moderation. The analysis informed design features for a mindfulness virtual community.
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Lim, Sylvia W., Rosy Chhabra, Ayelet Rosen, Andrew D. Racine, and Elizabeth M. Alderman. "Adolescents’ Views on Barriers to Health Care." Journal of Primary Care & Community Health 3, no. 2 (November 30, 2011): 99–103. http://dx.doi.org/10.1177/2150131911422533.
Повний текст джерелаАнотація:
Objectives: To determine from adolescents using health care their: 1) perceptions of barriers to obtaining health services, 2) views on how to overcome the barriers and 3) views on how to create an adolescent-friendly primary care practice. Design: Six focus group interviews. Methods: Adolescents 11-21 years old from three health centers in the Bronx were recruited. Main Outcome Measures: 1) barriers to accessing health care such as insurance, language barriers, transportation, making an appointment; 2) identifying barriers related to issues of consent and confidentiality; 3) exploring barriers to accessing mental health and related issues; and 4) their visions of an adolescent-friendly office. Results: Thirty-one adolescents, aged 11-21 years old, participated. The majority were Hispanic and 52% were female. Fifty percent of adolescents had a routine visit within the past month. Most adolescents reported experiencing barriers to making an appointment. Additionally, they complained about long waiting times to be seen by providers on the day of their scheduled appointment. Another key barrier was related to knowledge and perceptions about consent and confidentiality. Further, in regard to mental health, many adolescents from focus groups reported that they felt that their primary providers had little interest in this topic and limited knowledge about it. Most of the adolescents reported no barriers with insurance, language or transportation. Their visions of an adolescent-friendly office would include a separate adolescent waiting area equipped with entertainment units. Conclusion: In this study of adolescents who already have primary care providers and are seemingly well-connected to the health care system, there remained significant reported barriers to accessing necessary health services.
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Fobia, Aleia Clark, Jessica Holzberg, Casey Eggleston, Jennifer Hunter Childs, Jenny Marlar, and Gerson Morales. "Attitudes towards Data Linkage for Evidence-Based Policymaking." Public Opinion Quarterly 83, S1 (2019): 264–79. http://dx.doi.org/10.1093/poq/nfz008.
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Abstract In a recent report, the Commission for Evidence-Based Policymaking advocated for expanded use of data, including data linkage, from federal statistical and regulatory agencies to help guide decision-making and ultimately improve programs and policies. How data sharing and linkage is framed is important, and attitudes about data sharing and linkage are driven by respondents’ privacy beliefs and views towards the government more generally. Using data from the RDD telephone Gallup Daily Tracking Survey, we examine how favorability towards data sharing for the purpose of informed decision-making compares to other purposes. Respondents were less favorable towards data sharing when the purpose was for informed decision-making than for efficient use of taxpayer money, government accountability, or for community benefits, suggesting this is an ineffective way to frame data sharing to increase support. However, views towards the government, beliefs about privacy, and response behavior are still important determinants of favorability.
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Negash, Mikias, Menberework Chanyalew, Tewodros T Gebresilase, Bizunesh Sintayehu, Temesgen Anteye, Abraham Aseffa, and Melanie J. Newport. "Rapid ethical appraisal of stakeholder views on research prior to undertaking immunopathogenesis studies on podoconiosis in northeast Ethiopia during a period of social instability." Transactions of The Royal Society of Tropical Medicine and Hygiene 115, no. 9 (February 11, 2021): 1026–38. http://dx.doi.org/10.1093/trstmh/trab003.
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Abstract Background Undertaking research and attaining informed consent can be challenging when there is political unrest and community mistrust. Rapid ethical appraisal (REA) is a tool that uses qualitative methods to explore sociocultural issues that may affect the ethical conduct of research. Methods We used REA in northeast Ethiopia shortly following a period of unrest, during which violence against researchers occurred, to assess stakeholder perceptions of research, researchers and the informed consent process. We held 32 in-depth interviews and 2 focus group discussions. Results Most community members had little awareness about podoconiosis or healthcare research. Convincing the community to donate blood for research is challenging due to association with HIV testing. The attack on researchers was mainly motivated by the community's mistrust of their intentions against the background of a volatile political situation. Social media contributed to the spread of misinformation. Lack of community engagement was also a key contributing factor. Conclusions Using REA, we identified potential barriers to the informed consent process, participant recruitment for data and specimen collection and the smooth conduct of research. Researchers should assess existing conditions in the study area and engage with the community to increase awareness prior to commencing their research activities.
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Judd, Justin St J., Fiona K. Judd, and Graham D. Burrows. "Psychiatrists and Negligence." Australian & New Zealand Journal of Psychiatry 20, no. 2 (June 1986): 233–36. http://dx.doi.org/10.3109/00048678609161336.
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There is an increasing concern about potential negligence actions being issued against psychiatrists. This has resulted from a greater interest by the community in the issues of informed consent and involuntary hospitalisation. This paper gives an overview of the present law relating to negligence relevant to the treating psychiatrist. Traditional views in the areas of contract and tort, with some comments on the current changes in that law, are described.
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DeIorio, Nicole M., Katie B. McClure, Maria Nelson, K. John McConnell, and Terri A. Schmidt. "Ethics Committee Experience with Emergency Exception from Informed Consent Protocols." Journal of Empirical Research on Human Research Ethics 2, no. 3 (September 2007): 23–30. http://dx.doi.org/10.1525/jer.2007.2.3.23.
Повний текст джерелаАнотація:
Since 1996, U.S. federal regulations allow research without informed consent to study emergency conditions, if there is currently no satisfactory treatment for the condition, no time to obtain advance consent from the patient or representative, and if there is community involvement through a public disclosure and community consultation process. REB experiences since then are unknown. We surveyed REB chairpersons at the 126 United States medical schools to quantify reviewed protocols and identify attitudes about the rule, to better understand the rule's impact on REBs. Sixty-nine surveys were returned (55%). Fifty-two respondents reviewing human research had heard of the Rule. Forty-eight percent (25/52) had reviewed such a study; 40% of those had rejected at least one. Seventy-eight percent believe the rule protects human subjects, and 88% feel prepared to implement them. REB views differed from public opinion on how best to enact notification and consultation.
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Baker, Francis X., and Jon F. Merz. "What gives them the right? Legal privilege and waivers of consent for research." Clinical Trials 15, no. 6 (October 3, 2018): 579–86. http://dx.doi.org/10.1177/1740774518803122.
Повний текст джерелаАнотація:
Waivers of informed consent for research participation are permitted in the United States under the Common Rule, the Health Insurance Portability and Accountability Act regulations, and the US Food and Drug Administration’s Exception from Informed Consent rule for emergency research. We assess the novel question regarding what legal right researchers have to carry out research procedures on or about another person, be it experimental medical intervention, psychological or social manipulation, or invasion of privacy, without the permission of their subjects. Our analysis frames waivers of consent as a species of presumed consent, and we address the underlying empirical question of whether it is reasonable to believe that subjects from whom no consent is sought would in fact agree, if asked. A scoping review of what is known about participation and refusal rates in United States-based research suggests that a large minority, on average, do not agree to take part in research. Refusal rates vary widely. This suggests that, while researchers may assert the social utility of their studies are high enough to justify waivers, there is reason to suspect that many who would be enrolled under a waiver of consent would not want to be enrolled. We conclude that waivers should be rare and that institutional review boards and researchers must explicitly address study acceptability in the community at large and the target population of their proposed research.
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Oyedokun, Taofiq, Andrew Donauer, James Stempien, and Shari McKay. "Self-documentary in the emergency department: Perspectives on patients recording their own procedures." CJEM 21, no. 3 (August 20, 2018): 384–90. http://dx.doi.org/10.1017/cem.2018.423.
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ABSTRACTObjectivesPatients often bring their smartphones to the emergency department (ED) and want to record their procedures. There was no clear ED recording policy in the Saskatoon Health Region nor is there in the new Saskatchewan Health Authority. With limited literature on the subject, clinicians currently make the decision to allow/deny the request to record independently. The purpose of this study was to examine and compare patient and clinician perspectives concerning patients recording, in general, and recording their own procedures in the ED.MethodsSurveys were developed for patients and clinicians with respect to history and opinions about recording/being recorded. ED physicians and nurses, and patients>17 years old who entered the ED with a laceration requiring stitches were recruited to participate; 110 patients and 156 staff responded.ResultsThere was a significant difference between the proportion of patients (61.7% [66/107]) and clinicians (28.1% [41/146]) who believed that patients should be allowed to video record their procedure. There was also a significant difference between clinicians and patients with regard to audio recording, but not “selfies” (pictures). However, with no current policy, 47.8% (66/138) of clinicians said that they would allow videos if asked, with caveats about staff and patient privacy, prior consent, and procedure/patient care.ConclusionContrary to patients’ views, clinicians were not in favour of allowing audio or video recordings in the ED. Concerns around consent, staff and patient privacy, and legal issues warrant the development of a detailed policy if the decision is made in favour of recording.
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Kreuter, Frauke, Georg-Christoph Haas, Florian Keusch, Sebastian Bähr, and Mark Trappmann. "Collecting Survey and Smartphone Sensor Data With an App: Opportunities and Challenges Around Privacy and Informed Consent." Social Science Computer Review 38, no. 5 (December 18, 2018): 533–49. http://dx.doi.org/10.1177/0894439318816389.
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The new European General Data Protection Regulation (GDPR) imposes enhanced requirements on digital data collection. This article reports from a 2018 German nationwide population-based probability app study in which participants were asked through a GDPR compliant consent process to share a series of digital trace data, including geolocation, accelerometer data, phone and text messaging logs, app usage, and access to their address books. With about 4,300 invitees and about 650 participants, we demonstrate (1) people were just as willing to share such extensive digital trace data as they were in studies with far more limited requests; (2) despite being provided more decision-related information, participants hardly differentiated between the different data requests made; and (3) once participants gave consent, they did not tend to revoke it. We also show (4) evidence for a widely-held belief that explanations regarding data collection and data usage are often not read carefully, at least not within the app itself, indicating the need for research and user experience improvement to adequately inform and protect participants. We close with suggestions to the field for creating a seal of approval from professional organizations to help the research community promote the safe use of data.
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Parker, Anneka, Peter Harris, and Bridget Haire. "International students' views on sexual health: a qualitative study at an Australian university." Sexual Health 17, no. 3 (2020): 231. http://dx.doi.org/10.1071/sh19209.
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Background The number of international students at Australian universities is rapidly increasing, and they contribute significantly to Australia’s economy. However, concerns have been raised for the health and wellbeing of international students, and there is limited information concerning international students with regard to their sexual health. Methods: Overall, 13 individual semi-structured in-depth interviews were conducted with 13 international students at an Australian university, aiming to understand the views and experiences of international students with regard to their sexual health and wellbeing. The interviews were analysed thematically, generating four themes. Results: Participants had a varied understanding of sexual consent, which often included concerns about the practicalities of saying ‘no’ to unwanted sexual interactions and misinformation about the effect of reporting sexual misconduct on their privacy and visa status. Cultural and familial taboos were often inherited, but many participants described an evolution of personal views and attitudes regarding topics such as sex before marriage and same-sex relationships, which had occurred since moving to Australia. Participants expressed that they received large amounts of information about sexual health, but often lacked the skills to navigate that information and access relevant support. Conclusions: These data, along with participants’ suggestions for future support and education, are important for understanding the complex experiences of international students at Australian universities, and should be considered when implementing future sexual health education and support programs.
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Anderson, Melissa L., Timothy Riker, Stephanie Hakulin, Jonah Meehan, Kurt Gagne, Todd Higgins, Elizabeth Stout, Emma Pici-D’Ottavio, Kelsey Cappetta, and Kelly S. Wolf Craig. "Deaf ACCESS: Adapting Consent Through Community Engagement and State-of-the-Art Simulation." Journal of Deaf Studies and Deaf Education 25, no. 1 (November 29, 2019): 115–25. http://dx.doi.org/10.1093/deafed/enz035.
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Abstract One of the most understudied health disparity populations in the United States is the Deaf community, a sociolinguistic minority group of more than 500,000 individuals who communicate via American Sign Language. Research on Deaf health disparities is lacking due to inaccessible recruitment, sampling, and data collection procedures, as well as the fundamental disconnect between medical and cultural views of Deaf people. A potential starting place for addressing inaccessible research methods and mistrust of the biomedical research community is the careful reconsideration of the traditional informed consent process, often a Deaf individual’s first point of contact with the research world. Yet, most Deaf individuals experience obstacles to engaging in informed consent due to differences in language and development compared to hearing individuals. In response to these issues, our team led a three-phase, formative, community-engaged approach to adapt the informed consent process and train research staff in the updated method so that all required components are properly communicated and understood. The goals of our work were to promote Deaf engagement in research about the Deaf community, increase the number of Deaf individuals who participate in general population biomedical research, and generalize our findings to improve research accessibility for the general population.
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Taitingfong, Riley, Cinnamon S. Bloss, Cynthia Triplett, Julie Cakici, Nanibaa’ Garrison, Shelley Cole, Julie A. Stoner, and Lucila Ohno-Machado. "A systematic literature review of Native American and Pacific Islanders’ perspectives on health data privacy in the United States." Journal of the American Medical Informatics Association 27, no. 12 (October 15, 2020): 1987–98. http://dx.doi.org/10.1093/jamia/ocaa235.
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Abstract Background Privacy-related concerns can prevent equitable participation in health research by US Indigenous communities. However, studies focused on these communities' views regarding health data privacy, including systematic reviews, are lacking. Methods We conducted a systematic literature review analyzing empirical, US-based studies involving American Indian/Alaska Native (AI/AN) and Native Hawaiian or other Pacific Islander (NHPI) perspectives on health data privacy, which we define as the practice of maintaining the security and confidentiality of an individual’s personal health records and/or biological samples (including data derived from biological specimens, such as personal genetic information), as well as the secure and approved use of those data. Results Twenty-one studies involving 3234 AI/AN and NHPI participants were eligible for review. The results of this review suggest that concerns about the privacy of health data are both prevalent and complex in AI/AN and NHPI communities. Many respondents raised concerns about the potential for misuse of their health data, including discrimination or stigma, confidentiality breaches, and undesirable or unknown uses of biological specimens. Conclusions Participants cited a variety of individual and community-level concerns about the privacy of their health data, and indicated that these deter their willingness to participate in health research. Future investigations should explore in more depth which health data privacy concerns are most salient to specific AI/AN and NHPI communities, and identify the practices that will make the collection and use of health data more trustworthy and transparent for participants.
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McMurter, Britney, Louise Parker, Robert B. Fraser, Fergall Magee, Christa Kozanczyn, and Conrad V. Fernandez. "Parental Views On Consent, Tissue Taking and Tissue Banking in Pediatric Oncology Patients." Blood 114, no. 22 (November 20, 2009): 69. http://dx.doi.org/10.1182/blood.v114.22.69.69.
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Abstract Abstract 69 Background. Ethical challenges associated with tissue banking in pediatric populations include consent, privacy and confidentiality, conflicts of interest, return of summary and individualized results and logistical issues. A gap in the literature exists in applying theoretical claims because of a paucity of empirical evidence with respect to parental attitudes towards tissue banking for their children. The purpose of this study was to investigate parental attitudes to ethical issues in tissue banking while acting as surrogate decision-makers for pediatric malignant hematology and oncology populations. Methods. A validated questionnaire was developed through literature review, an expert content validity exercise and a pilot study. The final questionnaire and 2 reminders with return postage were sent to parents of 104 consecutively diagnosed, pediatric oncology patients treated at the IWK Health Centre in Halifax, Nova Scotia, from January 2006 to December 2007. The questionnaire examined ethical domains related to consent, tissue acquisition for banking and subsequent use, as well as patient and parent demographics. Results. Fifty four parents (including 10 of 16 parents of children who were deceased) completed the questionnaires. The majority of the respondents were Caucasian (98%, n=53) and primarily spoke English (83%, n=45). 35% of patients were diagnosed with acute lymphoid leukemia or acute myeloid leukemia at an average age of approximately 8 years old. Most respondents (n=46, 85%) stated that they would agree to have tissue obtained in order to classify the cancer. 48 parents (89%) reported that they would agree to have their child's tissue sent anywhere in the world for research purposes. If a severe underlying health condition existed, 98% of parents (n=53) would want genetic research to be done if it might improve the immediate or future health of their child. 45 respondents (83%) stated that they would want genetic research to be done, if it might improve their personal health, and 76% of parents (n=41) agreed that they would still want genetic research to be undertaken, even if it would not improve their child's health. In a situation where a child is refusing a very painful procedure strictly for research purposes, 41% of parents said that they would not go through with the procedure, while 15% said they would do so regardless of the child's dissent. 54% of parents (n=29) feel that they should be asked for consent if previously stored tissue is to be used for a new research purpose. When a patient reaches the age of majority, 98% of parents agree that their child should be given the opportunity to confirm consent and 71% feel that the now mature child should be able to then withdraw consent. Only 2% of respondents believe stored tissue should be destroyed in the event that a patient (who is now the age of majority) cannot be contacted to confirm consent. 40 parents (74%) believed that they have few or no rights to any money gained as a result of research using their child's tissue; and 83% believed that the money should be used to fund childhood cancer research. In the setting where approximately two thirds of children would be offered research participation, 26% of respondents (n=14) cannot remember if their child was offered research participation, and 30% of parents (n=16) cannot recall if they provided consent. 3 parents reported that they did not understand the consent forms and 30% of parents (n=16) felt that they were not given adequate time to read the forms. While most parents agree that all their research participation questions were thoroughly addressed, 35% reported (n=19) that more time would have been helpful. Conclusions. Most parents are willing to participate in tissue research providing the child is not exposed to extra pain. Most parents felt that they had sufficient information to provide consent but a significant minority would like more time. Parents generally do not feel a right to monetary gains from tissue research or express concerns about sending tissue internationally for research purposes. In addition, parents are not apprehensive about genetic research being conducted on banked tissues, even if it cannot directly help the health of their child or themselves. This information may help Institutional Review Boards in assessing parentally perceived risks of research participation, and researchers in providing consent elements that parents require to make fully informed choices. Disclosures: No relevant conflicts of interest to declare.
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Leibenger, Dominik, Frederik Möllers, Anna Petrlic, Ronald Petrlic, and Christoph Sorge. "Privacy Challenges in the Quantified Self Movement – An EU Perspective." Proceedings on Privacy Enhancing Technologies 2016, no. 4 (October 1, 2016): 315–34. http://dx.doi.org/10.1515/popets-2016-0042.
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Abstract The gathering of data about oneself (such as running speed, pulse, breathing rate, food consumption, etc.) is rapidly becoming more popular, and has lead to the catch phrase “Quantified Self” (QS). While this trend creates opportunities both for individuals and for society, it also creates risks, due to the data’s personal and often sensitive nature. Countering these risks, while keeping the benefits of QS services, is a task both for the legal system and for the technical community. However, it should also take users’ expectations into account. We therefore analyze the legal situation of QS services based on European law and the privacy policies of some major service providers to clarify the practical consequences for users. We present the result of a study concerning the users’ views on privacy, revealing a conflict between the user’s expectations and the providers’ practices. To help resolve the conflict, we discuss how existing and future privacy-enhancing technologies can avoid the risks associated with QS services.
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McCluskey, Alison, Garth Kendall, and Sharyn Burns. "Students’, parents’ and teachers’ views about the resources required by school nurses in Perth, Western Australia." Journal of Research in Nursing 24, no. 7 (November 8, 2018): 515–26. http://dx.doi.org/10.1177/1744987118807250.
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Background Nurses play a significant role in promoting health in schools; however, they are often poorly resourced to do so. Aims The aim of the study was to identify the perceptions of students, parents and teachers regarding the resources school nurses require in order to practise effectively in the secondary school environment in Perth, Western Australia. Methods One-on-one interviews were conducted with parents, teachers, nurses, school principals and school counsellors. Focus groups were conducted at three schools with students in years 10, 11 and 12, parents and teachers. Interviews and focus group data were analysed using thematic analysis. Results It was acknowledged that nurses in all schools were under-resourced, with large student numbers contributing to high workloads. The importance of privacy during a visit to the school nurse was highlighted by students. All stakeholders discussed the advantages of nurses completing extra qualifications, in addition to an undergraduate degree. Appropriate support and supervision were also highlighted. Conclusions School nurses need to thoroughly document and describe the work that they do and collaborate within the school community to advocate for increased resources. There is a great need for further research regarding the school nurse role involving the whole school community, and most importantly the students.
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Walker, Léonie, and Jill Clendon. "The case for end-user involvement in design of health technologies." Journal of Telemedicine and Telecare 22, no. 8 (October 30, 2016): 443–46. http://dx.doi.org/10.1177/1357633x16670479.
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This paper reports a subset of data from a mixed methods project interviewing community nurses and nurse leaders/managers to explore the views, expectations, practice and attitudes of registered nurses working in the community concerning electronic health records and the use of mobile devices. Nurses displayed excellent understanding of privacy and consent concerning electronic patient records and health information technology (e-health). With targeted, individualised education, nurses use e-health and telehealth effectively. However, significant barriers were found regarding duplication of paper and electronic patient notes and multiple logins for different platforms and systems, resulting in forgotten and shared passwords. There was also evidence of some avoidance of essential systems; lack of infrastructure in some settings; inadequate systems for the use of digital cameras (e.g. tracking wound healing); and inability to access patient notes across settings to ensure integrated care. In conclusion, nurses are the largest group of health practitioners in New Zealand and are at the front line of patient care. Nurses need systems designed around their work methods and a good understanding of e-health in order to be able to use it effectively. Greater consultation with nurses is required to ensure the potential of e-health and its use is maximised.
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Turvey, Carolyn L., Dawn M. Klein, Kim M. Nazi, Susan T. Haidary, Omar Bouhaddou, Nelson Hsing, and Margaret Donahue. "Racial differences in patient consent policy preferences for electronic health information exchange." Journal of the American Medical Informatics Association 27, no. 5 (March 9, 2020): 717–25. http://dx.doi.org/10.1093/jamia/ocaa012.
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Abstract Objective This study aimed to explore the association between demographic variables, such as race and gender, and patient consent policy preferences for health information exchange as well as self-report by VHA enrollees of information continuity between Veterans Health Administration (VHA) and community non-VHA heath care providers. Materials and Methods Data were collected between March 25, 2016 and August 22, 2016 in an online survey of 19 567 veterans. Three questions from the 2016 Commonwealth Fund International Health Policy Survey, which addressed care continuity, were included. The survey also included questions about consent policy preference regarding opt-out, opt-in, and “break the glass” consent policies. Results VHA enrollees had comparable proportions of unnecessary laboratory testing and conflicting information from providers when compared with the United States sample in the Commonwealth Survey. However, they endorsed medical record information being unavailable between organizations more highly. Demographic variables were associated with gaps in care continuity as well as consent policy preferences, with 56.8% of Whites preferring an opt-out policy as compared with 40.3% of Blacks, 44.9% of Hispanic Latinos, 48.3% of Asian/Pacific Islanders, and 38.3% of Native Americans (P < .001). Discussion Observed large differences by race and ethnicity in privacy preferences for electronic health information exchange should inform implementation of these programs to ensure cultural sensitivity. Veterans experienced care continuity comparable to a general United States sample, except for less effective exchange of health records between heath care organizations. VHA followed an opt-in consent policy at the time of this survey which may underlie this gap.
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Helps, Catherine, Julie Leask, Lesley Barclay, and Stacy Carter. "Understanding non-vaccinating parents’ views to inform and improve clinical encounters: a qualitative study in an Australian community." BMJ Open 9, no. 5 (May 2019): e026299. http://dx.doi.org/10.1136/bmjopen-2018-026299.
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ObjectivesTo explain vaccination refusal in a sample of Australian parents.DesignQualitative design, purposive sampling in a defined population.SettingA geographically bounded community of approximately 30 000 people in regional Australia with high prevalence of vaccination refusal.ParticipantsSemi structured interviews with 32 non-vaccinating parents: 9 fathers, 22 mothers and 1 pregnant woman. Purposive sampling of parents who had decided to discontinue or decline all vaccinations for their children. Recruitment via local advertising then snowballing.ResultsThematic analysis focused on explaining decision-making pathways of parents who refuse vaccination. Common patterns in parents’ accounts included: perceived deterioration in health in Western societies; a personal experience introducing doubt about vaccine safety; concerns regarding consent; varied encounters with health professionals (dismissive, hindering and helpful); a quest for ‘the real truth’; reactance to system inflexibilities and ongoing risk assessment.ConclusionsWe suggest responses tailored to the perspectives of non-vaccinating parents to assist professionals in understanding and maintaining empathic clinical relationships with this important patient group.
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McCradden, Melissa D., Tasmie Sarker, and P. Alison Paprica. "Conditionally positive: a qualitative study of public perceptions about using health data for artificial intelligence research." BMJ Open 10, no. 10 (October 2020): e039798. http://dx.doi.org/10.1136/bmjopen-2020-039798.
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ObjectivesGiven widespread interest in applying artificial intelligence (AI) to health data to improve patient care and health system efficiency, there is a need to understand the perspectives of the general public regarding the use of health data in AI research.DesignA qualitative study involving six focus groups with members of the public. Participants discussed their views about AI in general, then were asked to share their thoughts about three realistic health AI research scenarios. Data were analysed using qualitative description thematic analysis.SettingsTwo cities in Ontario, Canada: Sudbury (400 km north of Toronto) and Mississauga (part of the Greater Toronto Area).ParticipantsForty-one purposively sampled members of the public (21M:20F, 25–65 years, median age 40).ResultsParticipants had low levels of prior knowledge of AI and mixed, mostly negative, perceptions of AI in general. Most endorsed using data for health AI research when there is strong potential for public benefit, providing that concerns about privacy, commercial motives and other risks were addressed. Inductive thematic analysis identified AI-specific hopes (eg, potential for faster and more accurate analyses, ability to use more data), fears (eg, loss of human touch, skill depreciation from over-reliance on machines) and conditions (eg, human verification of computer-aided decisions, transparency). There were mixed views about whether data subject consent is required for health AI research, with most participants wanting to know if, how and by whom their data were used. Though it was not an objective of the study, realistic health AI scenarios were found to have an educational effect.ConclusionsNotwithstanding concerns and limited knowledge about AI in general, most members of the general public in six focus groups in Ontario, Canada perceived benefits from health AI and conditionally supported the use of health data for AI research.
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Tracy, C. Shawn, Neil Drummond, Lorraine E. Ferris, Judith Globerman, Philip C. Hébert, Dorothy M. Pringle, and Carole A. Cohen. "To Tell or Not to Tell? Professional and Lay Perspectives on the Disclosure of Personal Health Information in Community-Based Dementia Care." Canadian Journal on Aging / La Revue canadienne du vieillissement 23, no. 3 (2004): 203–15. http://dx.doi.org/10.1353/cja.2004.0039.
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ABSTRACTDevelopments in information technology and the ongoing restructuring of health services to increase provision in community settings militate in favour of a streamlining of communications and the exchange of information about patients among health and social care providers. Yet the principles of confidentiality and privacy appear to inhibit this process. In order to explore the practical, ethical, and legal imperatives attendant upon personal health information exchange, we conducted a series of interviews with professional care providers, persons with early-stage dementia, and their family caregivers. The findings indicate some degree of discordance. Professionals reported valuing disclosure both to colleagues and family caregivers on the basis of its being in the patients' best interests. Patients also valued inter-professional exchange, but sought strong control over disclosure to family members. Family caregivers valued being kept informed of the patient's condition, even without the latter's consent. Implications for research and policy are discussed.
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Staccini, Pascal, and Annie Lau. "Findings from 2017 on Consumer Health Informatics and Education: Health Data Access and Sharing." Yearbook of Medical Informatics 27, no. 01 (August 2018): 163–69. http://dx.doi.org/10.1055/s-0038-1641218.
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Objective: To summarize the state of the art during the year 2017 in consumer health informatics and education, with a special emphasis on sharing health data and accessing personal health information (PHI) from patients' and consumers' perspective. Methods: We conducted a systematic search of articles published in PubMed using a predefined set of queries which identified 228 potential articles for review. The section editors then screened these articles according to topic relevance and selected 15 candidate best papers for full review and scoring by a panel of international experts. Based on the scores and the reviews, four papers received the highest score and were selected in a consensus meeting as the best papers on health data access and sharing from consumers' and patients' perspective. Results: These four papers were categorised into the following topics: 1) data sharing for research and governance in privacy protection; 2) use of personal health information and individual privacy concerns; and 3) consumers' views and demographic characteristics regarding health data sharing and the use of digital health portals. Overall, it was surprising to see only a small number of papers reporting original research in this area. Conclusions: Patients understand the need for sharing information to facilitate best care and to enrich biomedical knowledge. When confronted with the reality of accessing information systems for their own information, patients are concerned about usability as well as privacy. Overall, there is a need for more emphasis on: 1) considering privacy as a feature defined by design; 2) using specific consent approaches and data sharing mechanisms for recruiting clinical trial participants; 3) taking into account socio-demographic characteristics when promoting consumer access to personal health information; and 4) defining indicators of high-quality care to incorporate healthcare professionals' level of caution when accessing patients' medical information and fostering patient trust in data exchange. Ultimately, privacy mechanisms should be part of the design process and not only be implemented when security has been breached and violated.
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Shahid, Arsalan, Thien-An Ngoc Nguyen, and M.-Tahar Kechadi. "Big Data Warehouse for Healthcare-Sensitive Data Applications." Sensors 21, no. 7 (March 28, 2021): 2353. http://dx.doi.org/10.3390/s21072353.
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Obesity is a major public health problem worldwide, and the prevalence of childhood obesity is of particular concern. Effective interventions for preventing and treating childhood obesity aim to change behaviour and exposure at the individual, community, and societal levels. However, monitoring and evaluating such changes is very challenging. The EU Horizon 2020 project “Big Data against Childhood Obesity (BigO)” aims at gathering large-scale data from a large number of children using different sensor technologies to create comprehensive obesity prevalence models for data-driven predictions about specific policies on a community. It further provides real-time monitoring of the population responses, supported by meaningful real-time data analysis and visualisations. Since BigO involves monitoring and storing of personal data related to the behaviours of a potentially vulnerable population, the data representation, security, and access control are crucial. In this paper, we briefly present the BigO system architecture and focus on the necessary components of the system that deals with data access control, storage, anonymisation, and the corresponding interfaces with the rest of the system. We propose a three-layered data warehouse architecture: The back-end layer consists of a database management system for data collection, de-identification, and anonymisation of the original datasets. The role-based permissions and secured views are implemented in the access control layer. Lastly, the controller layer regulates the data access protocols for any data access and data analysis. We further present the data representation methods and the storage models considering the privacy and security mechanisms. The data privacy and security plans are devised based on the types of collected personal, the types of users, data storage, data transmission, and data analysis. We discuss in detail the challenges of privacy protection in this large distributed data-driven application and implement novel privacy-aware data analysis protocols to ensure that the proposed models guarantee the privacy and security of datasets. Finally, we present the BigO system architecture and its implementation that integrates privacy-aware protocols.
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Fritsch, Lothar. "Privacy-Respecting Location-Based Service Infrastructures: A Socio-Technical Approach to Requirements Engineering." Journal of Theoretical and Applied Electronic Commerce Research 2, no. 3 (December 1, 2007): 1–17. http://dx.doi.org/10.3390/jtaer2030018.
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This article presents an approach for the design of location-based information systems that support privacy functionality. Privacy-enhancing technology (PET) has been available for a considerable amount of time. New online applications and infrastructures for mobile and ubiquitous use have been installed. This has been done without usage of available PET, although they are favored by data protection experts. Designers of locationbased services (LBS) create infrastructures for business or application specific purposes. They have profitoriented views on the rationale for PET deployment. Finally, users have requirements that might be neither on the PET community’s nor on the business people's agenda. Many disciplines provide knowledge about the construction of community-spanning information systems. The challenge for designers of infrastructures and applications is to find a consensus that models all stakeholders’ interests – and takes advantage all involved community’s knowledge. This paper groups LBS stakeholders into a framework based onto a sociological knowledge construct called “boundary object”. For this purpose, a taxonomical analysis of publications in the stakeholder communities is performed. Then the paper proposes a socio-technical approach. Its goal is to find a suitable privacy design for a LBS infrastructure based on the boundary object. Topics for further interdisciplinary research efforts are identified and proposed for discussion.
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Lorenzo, Pierpaolo Di, Claudia Casella, Emanuele Capasso, Adelaide Conti, Piergiorgio Fedeli, Fabio Policino, and Massimo Niola. "The central importance of information in cosmetic surgery and treatments." Open Medicine 13, no. 1 (April 18, 2018): 153–57. http://dx.doi.org/10.1515/med-2018-0024.
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AbstractThe increase in the number of people who choose to have medical procedures done to improve their appearance may be due to changed social and cultural factors in modern society, as well to the ease of access and affordable costs of these cosmetic treatments.Today, two elements legitimate recourse to this type of treatment: the broad definition of health accepted by the law and the scientific community, and the provision of meticulous information to the entitled party previous to obtaining his or her consent. In Italy, while current case-law views treatments exclusively for cosmetic purposes as unnecessary, if not even superfluous, it nonetheless demands that providers inform clients about the actual improvement that can be expected, as well as the risks of worsening their current esthetic conditions.
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Monaghan, Timothy, Jo-Anne Manski-Nankervis, and Rachel Canaway. "Big data or big risk: general practitioner, practice nurse and practice manager attitudes to providing de-identified patient health data from electronic medical records to researchers." Australian Journal of Primary Health 26, no. 6 (2020): 466. http://dx.doi.org/10.1071/py20153.
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Research utilising de-identified patient health information extracted from electronic medical records (EMRs) from general practices has steadily grown in recent years in response to calls to increase use of health data for research and other secondary purposes in Australia. Little is known about the views of key primary care personnel on this issue, which are important, as they may influence whether practices agree to provide EMR data for research. This exploratory qualitative study investigated the attitudes and beliefs of general practitioners (GPs), practice managers (PMs) and practice nurses (PNs) around sharing de-identified EMR patient health information with researchers. Semi-structured interviews were conducted with 11 participants (6 GPs, 3 PMs and 2 PNs) recruited via purposive sampling from general practices in Victoria, Australia. Transcripts were coded and thematically analysed. Participants were generally enthusiastic about research utilising de-identified health information extracted from EMRs for altruistic reasons, including: positive effects on primary care research, clinical practice and population health outcomes. Concerns raised included patient privacy and data breaches, third-party use of extracted data and patient consent. These findings can provide guidance to researchers and policymakers in designing and implementing projects involving de-identified health information extracted from EMRs.
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Abbot, Carolyn. "Losing the local? Public participation and legal expertise in planning law." Legal Studies 40, no. 2 (January 20, 2020): 269–85. http://dx.doi.org/10.1017/lst.2019.36.
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AbstractLocal community opposition to environmentally significant development proposals is commonplace, with environmental issues often at the forefront of community concerns. Whilst the development consent system provides multiple opportunities for local community groups to participate in the initial decision-making process, a legal commitment to such participation ensures neither its quality nor its effectiveness. This is especially so for local group ‘have-nots’ who lack resource and expertise, and whose focus on locally-based objections can delegitimise their valid and often broader concerns about the proposed development. This paper argues that access to legal expertise plays a significant role in promoting principles of fairness and competence in participation by helping shape local opposition views in a way that is both understood and accepted as valid by the planning system. Whilst there are important and valuable sources of advice and support currently available, many local groups find themselves in the position of having to raise considerable funds to pay for the legal expertise they need. This unsatisfactory position needs to be addressed if local groups are to meaningfully engage with the planning process.
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Golder, Su, Arabella Scantlebury, and Helen Christmas. "Understanding Public Attitudes Toward Researchers Using Social Media for Detecting and Monitoring Adverse Events Data: Multi Methods Study." Journal of Medical Internet Research 21, no. 8 (August 29, 2019): e7081. http://dx.doi.org/10.2196/jmir.7081.
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Background Adverse events are underreported in research studies, particularly randomized controlled trials and pharmacovigilance studies. A method that researchers could use to identify more complete safety profiles for medications is to use social media analytics. However, patient’s perspectives on the ethical issues associated with using patient reports of adverse drug events on social media are unclear. Objective The objective of this study was to explore the ethics of using social media for detecting and monitoring adverse events for research purposes using a multi methods approach. Methods A multi methods design comprising qualitative semistructured interviews (n=24), a focus group (n=3), and 3 Web-based discussions (n=20) with members of the public was adopted. Findings from a recent systematic review on the use of social media for monitoring adverse events provided a theoretical framework to interpret the study’s findings. Results Views were ascertained regarding the potential benefits and harms of the research, privacy expectations, informed consent, and social media platform. Although the majority of participants were supportive of social media content being used for research on adverse events, a small number of participants strongly opposed the idea. The potential benefit of the research was cited as the most influential factor to whether participants would give their consent to their data being used for research. There were also some caveats to people’s support for the use of their social media data for research purposes: the type of social media platform and consideration of the vulnerability of the social media user. Informed consent was regarded as difficult to obtain and this divided the opinion on whether it should be sought. Conclusions Social media users were generally positive about their social media data being used for research purposes; particularly for research on adverse events. However, approval was dependent on the potential benefit of the research and that individuals are protected from harm. Further study is required to establish when consent is required for an individual’s social media data to be used.
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Ford, Elizabeth, Keegan Curlewis, Akkapon Wongkoblap, and Vasa Curcin. "Public Opinions on Using Social Media Content to Identify Users With Depression and Target Mental Health Care Advertising: Mixed Methods Survey." JMIR Mental Health 6, no. 11 (November 13, 2019): e12942. http://dx.doi.org/10.2196/12942.
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Background Depression is a common disorder that still remains underdiagnosed and undertreated in the UK National Health Service. Charities and voluntary organizations offer mental health services, but they are still struggling to promote these services to the individuals who need them. By analyzing social media (SM) content using machine learning techniques, it may be possible to identify which SM users are currently experiencing low mood, thus enabling the targeted advertising of mental health services to the individuals who would benefit from them. Objective This study aimed to understand SM users’ opinions of analysis of SM content for depression and targeted advertising on SM for mental health services. Methods A Web-based, mixed methods, cross-sectional survey was administered to SM users aged 16 years or older within the United Kingdom. It asked participants about their demographics, their usage of SM, and their history of depression and presented structured and open-ended questions on views of SM content being analyzed for depression and views on receiving targeted advertising for mental health services. Results A total of 183 participants completed the survey, and 114 (62.3%) of them had previously experienced depression. Participants indicated that they posted less during low moods, and they believed that their SM content would not reflect their depression. They could see the possible benefits of identifying depression from SM content but did not believe that the risks to privacy outweighed these benefits. A majority of the participants would not provide consent for such analysis to be conducted on their data and considered it to be intrusive and exposing. Conclusions In a climate of distrust of SM platforms’ usage of personal data, participants in this survey did not perceive that the benefits of targeting advertisements for mental health services to individuals analyzed as having depression would outweigh the risks to privacy. Future work in this area should proceed with caution and should engage stakeholders at all stages to maximize the transparency and trustworthiness of such research endeavors.
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Evans, F., R. Deslandes, P. Deslandes, and S. Young. "Opinions of stakeholders about integrating pharmacists into Community Mental Health Teams." International Journal of Pharmacy Practice 30, Supplement_1 (April 1, 2022): i43. http://dx.doi.org/10.1093/ijpp/riac019.060.
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Abstract Introduction Pharmacists are routinely involved in optimising medicines for mental health patients during inpatient admissions through attending ward rounds and providing a clinical pharmacy service. (1) Despite literature demonstrating the benefits, specialist pharmacists are not routinely integrated in Community Mental Health Teams (CMHTs) (2) and there is little research to identify the barriers to pharmacists’ integration. The opinions of stakeholder who influence the design of community mental health services, are key to understanding these issues. Aim To explore the views of relevant stakeholders in one health board (HB) in Wales, regarding integration of pharmacists into CMHTs, and to make recommendations to overcome identified barriers to integration. Methods Semi-structured interviews using open questions with key stakeholders within two CMHTs and the HB’s adult mental health clinical board. Participants were selected purposively to allow recruitment of individuals who would provide insight into the proposed question(s). Written, informed consent was obtained. A deductive approach was used to define interview questions. Interviews were transcribed and analysed thematically using an inductive approach to explore the data without any pre-conceived ideas and identify additional key themes. The study was registered with the HB. Results Interviews (3 pharmacists, 2 consultant psychiatrists, 1 integrated manager, 2 clinical nurse leads and 2 general managers) lasted between 30-45 minutes. Analysis revealed five main themes; relationship with the pharmacist, including previous experiences and individual pharmacist’s personal attributes; CMHT workload relevant to pharmacists’ skills; workforce and financial pressures; the need for ongoing support for and from pharmacists; and pharmacists’ expertise including non-medical prescribing. Previous experience of working with specialist mental health pharmacist influenced participants’ views, those with limited experience were less clear about what a pharmacist’s role would be in CMHTs“…we haven’t had specialist pharmacist linked to us ………“Always can get in touch with pharmacy by e-mail or phone. Can see advantage of a pharmacist in the building, the medics would really like that it wouldn’t need to be every week maybe a morning every two weeks. We know where pharmacy are, not a dire need. Others identified a clear role for pharmacists, “running clinic for us especially when we have referrals from GP purely asking for medication reviews having [pharmacist] here the benefit surpasses most of the options we can offer through medic”. Participants believed pharmacists needed training in risk assessment and consultation skills and they should be prescribers to contribute effectively. Nine participants had worked previously with pharmacists, all advocated their integration into CMHTs. Conclusion This small-scale study suggests there is a desire to integrate pharmacists into CMHTs with a strong emphasis on their role in addressing medicine-related workload pressures. Positive relationships formed from prior experience of working with pharmacists strongly influenced support for integration. There are potential roles for pharmacists that would improve timeliness and quality of care for people supported by CMHTs. Resource constraints such as lack of funding and availability of appropriately trained pharmacists need to be resolved. Further work is necessary to investigate how these barriers can be addressed and to evaluate the cost-effectiveness of any pharmacy service delivered. References (1) Royal Pharmaceutical Society England (2018). No health without mental health: How can pharmacy support people with mental health problems? London. Royal Pharmaceutical Society England (2) Robinson, J. (2017). Challenging the Stigma. The Pharmaceutical Journal, November 2017, Vol 299, No 7907, [online] | DOI: 10.1211/PJ.2017.20203915 [Accessed 1 Mar. 2019]
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Nairn, Agnes, and Barbie Clarke. "Researching Children: Are We Getting it Right?: A Discussion of Ethics." International Journal of Market Research 54, no. 2 (March 2012): 177–98. http://dx.doi.org/10.2501/ijmr-54-2-177-198.
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As the role of children in society becomes more prominent, their participation in research seems set to increase. In this paper we review whether we are getting the ethics of children's research right. We show that, since the late 1980s, children have been treated universally as a special case and that they have been accorded their own special set of human rights (UNCRC), which primarily grants them rights to protection and participation. We go on to argue (with practical examples) that the core MRS research principles of well-being, voluntary informed consent and privacy/confidentiality must be applied to children with particular caution and care. We note that, as research with children grows and as new techniques are developed, we are presented with fresh challenges for keeping children safe and maintaining their trust. We end by presenting the results of a survey that sought children's views on being research participants in a quite sensitive piece of research. We found that children are highly appreciative of being consulted about their lives in general and being asked about their feelings. However we also found that some children can be uncomfortable with some of the issues raised and can feel compelled to answer the questions. We conclude that, while we have good industry codes, ethics evolves with shifting social, political and cultural patterns, and we need to keep challenging ourselves to maintain best practice.
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Ghimire, Lata. "Preventive Practices against COVID-19 during the Period of Lockdown in the Eastern Part of Kathmandu." Journal of Advanced Academic Research 7, no. 1 (June 30, 2020): 1–8. http://dx.doi.org/10.3126/jaar.v7i1.35385.
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A brief study of health seeking behavior was studied in the eastern region of the Kathmandu. 50 respondents were taken in the study. Their knowledge on the pandemic, their views of preventive measures, the practices they are doing and what are the problems they are facing and ultimately the possible way out of the disease was discussed with them taking their view. 50 respondent having equal number of male and female of the indigenous Tamang community were enrolled in the study taking their consent to take part in the study. The majority of the respondents were less educated with low income, thus have to work regularly for their daily essentials. Majority 92 % had stayed in one place and they were aware of the social distance (64%) as well. Regarding the hand washing with the soap and using sanitizer, they were found less serious about it.
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Tungohan, Ethel, and John Paul Catungal. "Virtual Qualitative Research Using Transnational Feminist Queer Methodology: The Challenges and Opportunities of Zoom-Based Research During Moments of Crisis." International Journal of Qualitative Methods 21 (January 2022): 160940692210900. http://dx.doi.org/10.1177/16094069221090062.
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In this paper, we discussed our experiences with Zoom-based virtual qualitative research with Asian international students attending Canadian universities. When reflecting on our study, we drew inspiration from Roberts et al., (2020) who highlight the ethical challenges that emerge when conducting virtual qualitative research with a community that is experiencing the harrowing effects of COVID-19 in real time. Yet we also departed from such work by considering the added ethical complexity of conducting research during COVID-19 with research participants and with research team members who have transnational lives. In answering the question, “how do you design a virtual qualitative research project with research participants and with a research team whose lives are transnational,” we discussed how our use of transnational feminist queer methodology allows us to emphasize accountability and flexibility and recognize the multiple-and-varied social locations of our research participants and our research team members. We realized that working with research participants who have transnational lives means that notions of risk and consent cannot only be considered from the standpoint of the individual who is participating in the project. Instead, it is paramount that risk and consent be considered from the standpoint of the individual’s larger, transnational community and location in global, geopolitical contexts. Transnational feminist queer methodology also allowed us to see the challenges and possibilities of virtual qualitative research. While Zoom presented challenges (namely, that our participants were concerned about their privacy), we found the functionalities of Zoom to enhance our research. Specifically, we found that the chatbox deepened participant engagement through the sharing of memes and GIFs, allowing more rapport to develop. Ultimately, we argue that virtual qualitative research is not an inferior alternative to in-person research but should instead be seen as a different way of doing research, one necessitating distinct methodologies and methods.
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Mills, Katie, Emma Harte, Adam Martin, Calum MacLure, Simon J. Griffin, Jonathan Mant, Catherine Meads, Catherine L. Saunders, Fiona M. Walter, and Juliet A. Usher-Smith. "Views of commissioners, managers and healthcare professionals on the NHS Health Check programme: a systematic review." BMJ Open 7, no. 11 (November 2017): e018606. http://dx.doi.org/10.1136/bmjopen-2017-018606.
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ObjectiveTo synthesise data concerning the views of commissioners, managers and healthcare professionals towards the National Health Service (NHS) Health Check programme in general and the challenges faced when implementing it in practice.DesignA systematic review of surveys and interview studies with a descriptive analysis of quantitative data and thematic synthesis of qualitative data.Data sourcesAn electronic literature search of MEDLINE, Embase, Health Management Information Consortium, Cumulative Index of Nursing and Allied Health Literature, Global Health, PsycInfo, Web of Science, OpenGrey, the Cochrane Library, NHS Evidence, Google Scholar, Google, ClinicalTrials.gov and the International Standard Randomised Controlled Trial Number registry from 1 January 1996 to 9 November 2016 with no language restriction and manual screening of reference lists of all included papers.Inclusion criteriaPrimary research reporting views of commissioners, managers or healthcare professionals on the NHS Health Check programme and its implementation in practice.ResultsOf 18 524 citations, 15 articles met the inclusion criteria. There was evidence from both quantitative and qualitative studies that some commissioners and general practice (GP) healthcare professionals were enthusiastic about the programme, whereas others raised concerns around inequality of uptake, the evidence base and cost-effectiveness. In contrast, those working in pharmacies were all positive about programme benefits, citing opportunities for their business and staff. The main challenges to implementation were: difficulties with information technology and computer software, resistance to the programme from some GPs, the impact on workload and staffing, funding and training needs. Inadequate privacy was also a challenge in pharmacy and community settings, along with difficulty recruiting people eligible for Health Checks and poor public access to some venues.ConclusionsThe success of the NHS Health Check Programme relies on engagement by those responsible for its commissioning, management and delivery. Recognising and addressing the challenges identified in this review, in particular the concerns of GPs, are important for the future of the programme.
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Abdul Hamid, Siti Hazariah, and Debbie Fallon. "Healthcare Professionals’ Perspectives on The Provision of Sexual and Reproductive Health to Young People in Malaysia." INTERNATIONAL JOURNAL OF CARE SCHOLARS 3, no. 1 (January 31, 2020): 3–10. http://dx.doi.org/10.31436/ijcs.v3i1.111.
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Objective: In Malaysia, sexual health issues among young people encompassing premarital sex, the incidence of STI including HIV/AIDS, unintended pregnancy, unsafe abortion and the practice of baby abandonment. Little is known about the provision of sexual health care for young people since it has not been examined in-depth in a Malaysian context. This study aimed to explore the perspectives of healthcare professionals who deliver sexual health services provision to young people within primary healthcare settings which included schools as part of an outreach programme. Methods: This qualitative study used a self-developed topic guide for in-depth interview with twenty-four healthcare professionals of several government health clinics in Malaysia. The aim was to understand healthcare professionals’ experiences of dealing with young people and their views on current sexual health services provision. The interview data were entered into Nvivo and analysed using thematic analysis. Results: The findings show that healthcare professionals regarded the use of the Adolescent Health Screening Form as a cornerstone for all initial interactions between and young people in health clinics. The findings also highlight the problem with an appointment system that includes lack of consultation times, privacy issues and the requirement of parental consent when dealing with unmarried young people. Conclusion: This study had recognized several facility-based obstacles that restricted sexual health services to young people in Malaysia. Their access to and the utilization of sexual health services are dependent on health care system improvement.
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Prajapati, Jagruti, and Riddhi Patel. "Menstrual hygiene among adolescent girls: A cross sectional study in urban community of Gandhinagar." Journal of Medical Research 1, no. 4 (August 25, 2015): 122–25. http://dx.doi.org/10.31254/jmr.2015.1406.
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Background: Menstruation & menstrual practices are still bounded by socio cultural restriction & taboos resulting in adolescent girls remain ignore of scientific facts & hygienic practices during menstruation. Increase knowledge about menstruation right from childhood may escalate safe practices and may help in mitigating the suffering of millions of women. Aims & Objectives: (1) To assess the knowledge and the practices of menstrual hygiene among adolescent girls. (2)To assess the restrictions practiced by adolescent girls during menstruation. Study Design: Cross sectional, descriptive, community based study. Setting: Anganawadi centers (AWCs) of Urban Health Training Center (UHTC) of GMERS Medical College, Gandhinagar, Gujarat, India. Methodology: Total 7 AWCs under UHC 24 in which approximately 155 girls were enrolled. All adolescent girls fit to inclusion criteria & give consent were taken as study subject. Structured questionnaire was used for data collection. Data was collected regarding menstrual cycle, knowledge about menstruation, practices during menstruation and menstrual hygiene. Statistics: Data entry & analysis was carried out in Microsoft excel. Statistical analysis was done by using frequency. Results: Out of 88 respondents, 50% attained menarche at the age between 12-14 yrs. Maximum number of girls (65.9%) have blood flow for 2-5 days while 18.2% have excessive blood flow. Out of total 39.8% girls know about menstruation before menarche and majority of (48.9%) reported mother as a source of information regarding menstruation. Only 17% girls have correct knowledge regarding organ form where bleeding occurs while 33.1 % girls were knew that menstruation is a physiological process. 21.6% girls believed that there is a toxin in menstrual blood. Sanitary pad was used by 26.1% girls. Those who were using cloth pieces out of them 33.8% facing problem of washing & drying either due to shortage of water, lack of privacy or drying. Around 30% girls were not using sanitary pad because of cost. The relation between mother’s education & knowledge regarding menstruation before menarche was not significant(X2= 2.41, P>0.05). Conclusion: Menstrual hygiene was satisfactory among adolescent girls but lack of knowledge & awareness regarding menstruation. Education regarding reproductive health & hygiene should be given by Anganawadi workers as well as included as a part of school curriculum. All mothers irrespective of their educational status should be taught to break their inhibitions about discussing with their daughters regarding menstruation before age of menarche.
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Ahsan, Muhammad, Zahwa Arshad Rana, Muazzam Ali, and Kainat Anwer. "Assessment of Knowledge, Concerns and Support of Physicians towards Bio banks in Pakistan, and their Willingness to Donate." Science Progress and Research 1, no. 4 (October 5, 2021): 382–90. http://dx.doi.org/10.52152/spr/2021.158.
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Bio specimen collection and storage and bio bank data have numerous ethical issues. Stakeholders' views on these ethical problems are essential because they may assist establish ethical standards for bio banking. Physicians are key stakeholders because they may contact prospective participants and become bio bank users. The aim of this research is to assess Pakistani doctors' views and knowledge regarding bio banking and willingness to donate. A cross-sectional online survey was conducted to poll Pakistani physicians’ attitudes and views regarding bio banks. Between January and April 2021.473 doctors completed the questionnaire. Participants had sufficient knowledge of bio banking. Of those, 74.2 stated that they had heard of the term "Human Genome Project," while 72.5% revealed that they were familiar with the term "bio banking." 61.5% of the participants showed their willingness to donate bio specimens. Marital status (0.001), faculty (0.001), involvement in research (0.038), blood and tissue testing in recent years (0.420) and demonstrated a significant relationship with willingness to donate. While general health status, recent hospitalization, family history of inherited diseases, incidence of chronic disease, and gender had no statistically significant associations with willingness to donate. Although65.8% agreed that bio banks should be able to exchange bio specimens with foreign research groups and only 49.5% agreed on collaboration with pharmaceutical companies. Although more than half of Pakistani doctors heard of bio banking, the presence of bio banks in Pakistan was restricted. They were concerned about marketing, widespread consent and confidentiality. There is a great gap of knowledge and awareness among stakeholders that should encompass several educational initiatives. Community conversations on the problems of marketing and the return of research findings should begin to achieve an agreement.
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Kruopštaitė, Ingrida, and Maryja Šupa. "Ethics in criminological research of online communities." Kriminologijos studijos 8 (December 21, 2020): 8–37. http://dx.doi.org/10.15388/crimlithuan.2020.8.1.
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The aim of this paper is to outline and critically analyse the ethical dilemmas faced by criminologists tasked with online community research. Online communities and online content serve as a valuable sources of criminological knowledge about online crime and deviance as well as formal and informal norm-making and means of social control. From discussion forum texts and blogs to multimedia posts in open and closed social networking groups, from visual and video materials on Instagram, Youtube, or Tiktok to organized crime group data exchanges in publicly inaccessible communication channels, there is great diversity and variety of the contents and forms of online communication enacted by online communities. Correspondingly, research projects are different – some focusing on the content as a linguistic object, others focusing on social relations, social network structure, and its ethnographic characteristics, while many fall in between. In addition, depending on the research goals and sensitivity of the research questions, researchers may opt for active interaction or passive (and sometimes covert) observation. Therefore there is no one-size-fits-all ethical solution for approaching online communities in criminology. Based on an in-depth analysis of methodological literature, the paper suggests that online community research is largely a matter of situational ethics, wherein researchers must make situation-aware ethical decisions about several key issues. In particular, they should aim to choose and provide arguments regarding: 1) expectations of publicity or privacy in publicly accessible information; 2) the need for informed consent or absence of such need; 3) ensuring balance between anonymity and authorship attribution; 4) securing collected data; and 5) correctly assessing risks to the researched individuals and communities, and the researchers themselves.
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Wrede, Christian, Annemarie Braakman-Jansen, and Lisette van Gemert-Pijnen. "Voices of Caregivers: Key Demands Towards AI-driven Home Monitoring in Community-based Dementia Care." Innovation in Aging 5, Supplement_1 (December 1, 2021): 660–61. http://dx.doi.org/10.1093/geroni/igab046.2495.
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Abstract While most people with dementia prefer to live at home for as long as possible, this also puts more pressure on both their informal and formal care network. To provide support in home-based dementia care, there is growing interest in technology that allows caregivers to remotely monitor health and safety of people with dementia. Novel generations of these technologies are using non-wearable, pervasive sensors coupled with algorithms to continuously collect and model meaningful in-home information. However, while these self-learning monitoring systems develop rapidly, their target users’ views and demands are still insufficiently mapped out. To identify possible barriers to acceptance and ways to overcome these, we conducted a scenario-based study, including semi-structured interviews with informal caregivers (n=19) and focus groups with home care professionals (n=16) of community-dwelling people with dementia. Inductive qualitative content analysis revealed that both groups of caregivers were concerned about the informational privacy of their care recipient with dementia, information overload, and ethical issues related to dehumanizing care. Identified demands mainly centered around how to overcome these barriers. We identified several demands related to specific functionalities, user experience factors, services surrounding the technology, and integration into the existing work context. Most notably, caregivers highlighted the importance of introducing AI-driven in-home monitoring technologies in a way it prevents them from feeling undervalued. In conclusion, our findings can help to inform the development of more acceptable and unobtrusive in-home monitoring technologies to support home-based dementia care.