David A . Rier
Bar-Ilan University, Sociology and Anthropology, Faculty Member
- Medical Sociology, Bioethics, Public Health, Sociology of Health, Sociology of Knowledge, Sociology of Science, and 20 morePhotography Theory, Sociology of Food and Eating, Science, Technology and Society, Illness narratives, the experience of chronic diseases, organ donation and transplantation, HIV/AIDS, diabetes, genetic diseases, and medicalisation., Online support groups, Sociology, Science and Technology Studies, Databases, Software, New Media, Politics And Sociology Of Risk, Sociology and Anthropology, Sociology of Risk, Research Ethics, Internet Studies, Digital Media, Science Communication, Internet & Society, Sociology of Health and Illness, and INTENSIVE CAREedit
- I am an academic sociologist, with formal training in public health. My research involves mainly medical sociology, ... moreI am an academic sociologist, with formal training in public health. My research involves mainly medical sociology, and sociology of science and knowledge. My research sometimes involves public health, and my teaching also includes sociology of food.edit
This paper describes CliniCrowd, a patient-designed, entrepreneurial, crowd-sourced citizen-science approach to evaluating mannitol-essentially, an orphan drug-as a Parkinson's disease treatment. As such, CliniCrowd addresses 'undone... more
This paper describes CliniCrowd, a patient-designed, entrepreneurial, crowd-sourced citizen-science approach to evaluating mannitol-essentially, an orphan drug-as a Parkinson's disease treatment. As such, CliniCrowd addresses 'undone science', and our paper contributes to the sociological literature thereon. Based on 38 qualitative interviews, fieldwork, and content analyses (2017-2020), we trace CliniCrowd's background and rationale. We: discuss undone science and its wider contexts; present earlier iterations of citizen-science and treatment activism; examine CliniCrowd's application of crowd-sourced citizen-science to address undone science around 'orphan drug' treatment for Parkinson's disease; explore how CliniCrowd has evolved, and re-framed its work, since its founding; ponder its future; and consider whether their approach can guide future citizen-science treatment research. Our paper contributes to the existing literature in four ways. First, we focus on medical treatment issues, an under-studied area of undone science. Second, we highlight orphan drugs as both major source of, and fruitful area for research on, undone science. Third, we describe CliniCrowd's pragmatic, entrepreneurialrather than the more common activist-citizen-science approach to addressing undone treatment science. Finally, from our data on CliniCrowd we distil a preliminary model for future treatment activism around undone science.
Research Interests: Entrepreneurial Economics, Expertise, Parkinson's Disease, Social Activism, STS (Anthropology), and 15 moreEntrepreneurial Orientation, Sociology of Science, Crowd Sourcing, Activism, Medical Anthropology, Social Anthropology applied to health and sickness, Sociology of Medicine, science and technology studies (STS), Citizen Science, Online activism, STS, ethnography, Anthropology of Medicine, Entrepreneurial Creativity, Patient Engagement, Treatment activism, and undone science
Research Interests:
Several investigators have discussed how insider/outsider issues influenced their research on haredim (‘ultra-Orthodox’ Jews). While they dealt mainly with ethnographic research, and generally from a position as outsiders, the present... more
Several investigators have discussed how insider/outsider issues influenced their research on haredim (‘ultra-Orthodox’ Jews). While they dealt mainly with ethnographic research, and generally from a position as outsiders, the present paper explores how our insider status as current members of the haredi community influenced our work in conducting survey research in this community. We describe two separate incidents (one involving peer review of our grant application, the other involving a journalist interested in our data) in which our insider status became an issue. We discuss our evolving perceptions of how our insider status related to our objectivity, and to our ethical responsibilities as researchers. In the process, we highlight a seldom-discussed, but potentially common form of ethical pitfall: selective development and publication of data the researcher finds personally uncomfortable.
Research Interests:
Existing studies of gender and lifecourse in science have not focused on publication decisions, and even less so for publication of studies liable to attract media and public attention. This paper is based on semi-structured interviews... more
Existing studies of gender and lifecourse in science have not focused on publication decisions, and even less so for publication of studies liable to attract media and public attention. This paper is based on semi-structured interviews with 61 US toxic-exposure epidemiologists about their publication decisions. It examines gender differences in how scientists, as they move through the lifecourse, approach publication decisions for research bearing potential societal implications. Though preliminary, the data suggest that males are overall more comfortable than females with pursuing visible publication and handling media coverage. However, males and females may begin to crisscross over time. Specifically, males started out in publishing potentially controversial papers in visible journals likely to attract media and public attention, but grew more cautious with age, rank, and experience. Amongst females, the situation was less homogenous: while some (often, the most elite) reported p...
Research Interests:
This paper describes CliniCrowd, a patient-designed, entrepreneurial, crowd-sourced citizen-science approach to evaluating mannitol--essentially, an orphan drug--as a Parkinson's disease treatment. As such, CliniCrowd addresses ‘undone... more
This paper describes CliniCrowd, a patient-designed, entrepreneurial, crowd-sourced citizen-science approach to evaluating mannitol--essentially, an orphan drug--as a Parkinson's disease treatment. As such, CliniCrowd addresses ‘undone science’, and our paper contributes to the sociological literature thereon. Based on 38 qualitative interviews, fieldwork, and content analyses (2017-2020), we trace CliniCrowd’s background and rationale. We: discuss undone science and its wider contexts; present earlier iterations of citizen-science and treatment activism; examine CliniCrowd’s application of crowd-sourced citizen-science to address undone science around ‘orphan drug’ treatment for Parkinson’s disease; explore how CliniCrowd has evolved, and re-framed its work, since its founding; ponder its future; and consider whether their approach can guide future citizen-science treatment research. Our paper contributes to the existing literature in four ways. First, we focus on medical treatment issues, an under-studied area of undone science. Second, we highlight orphan drugs as both major source of, and fruitful area for research on, undone science. Third, we describe CliniCrowd’s pragmatic, entrepreneurial--rather than the more common activist--citizen-science approach to addressing undone treatment science. Finally, from our data on CliniCrowd we distil a preliminary model for future treatment activism around undone science.
Keywords: Undone science; Crowd-sourcing; Treatment activism; Parkinson’s disease; Expertise; Entrepreneurial activism; Citizen-science.
Keywords: Undone science; Crowd-sourcing; Treatment activism; Parkinson’s disease; Expertise; Entrepreneurial activism; Citizen-science.
Research Interests: Medical Sociology, Ethics, Philosophy of Science, Applied Ethics, Epidemiology, and 15 morePublishing, Bioethics, Decision Making, Public Relations, Politics And Sociology Of Risk, Public Health, Medicine, Humans, Research and Publications, Female, Male, Media Coverage, Publications, Openness to experience, and Publication
Adolescent secondhand smoke exposure (SHSe) is associated with smoking initiation and independently damages health. We used data from the school-based 2003-2004 Israel National Health and Nutrition Youth survey (MABAT) to examine patterns... more
Adolescent secondhand smoke exposure (SHSe) is associated with smoking initiation and independently damages health. We used data from the school-based 2003-2004 Israel National Health and Nutrition Youth survey (MABAT) to examine patterns and determinants of SHSe in a multiethnic sample of Israeli adolescents. School and child response rates were high (school: 91.8%, child: 87.9%), with 6,274 participants. We used generalized estimating equations to examine SHSe determinants. Most Israeli adolescents were exposed to SHS (total: 85.6%; home: 40%; school: 31.4%; entertainment: 73.3%; other: 16.3%). Exposure patterns differed between the Jewish and non-Jewish sectors. Jews were more frequently exposed at school and entertainment venues than were non-Jews but were less frequently exposed at home. Druze were the least exposed and non-Arab Christians the most exposed. Secular Jews were more exposed than were religious Jews; the opposite was true among Arabs. Children of less-educated fathers were exposed more than children of more-educated fathers. Adolescents who smoked were more exposed than were nonsmokers. The high levels of SHSe among Israeli adolescents were characterized by different patterns of exposure among different population groups. Interventions to reduce adolescent SHSe, with appropriate tailoring, are urgently needed. These findings provide support for sustainable implementation of the recent governmentally approved tobacco control plan, which includes extended legislation for, and increased enforcement of, laws about smoking bans in schools and entertainment venues. Researchers elsewhere should be aware that levels and patterns of SHSe may vary greatly by subpopulation.
Research Interests:
Research Interests: Law, Legal Education, Science Communication, Internet Studies, Sociology of Knowledge, and 12 morePolitical Science, Internet Law, Sociology of Science, Internet Communication, Online publishing, Peer Review, Cyberspace, Self Publication, Scholarship, Legal Scholarship, Internet, and Internet Society
This paper describes obstacles encountered and strategies devised in planning and conducting a national telephone health survey (n = 459) of an insular, deeply traditional religious population, haredi (ultra-Orthodox Jewish) Israeli... more
This paper describes obstacles encountered and strategies devised in planning and conducting a national telephone health survey (n = 459) of an insular, deeply traditional religious population, haredi (ultra-Orthodox Jewish) Israeli women. The paper discusses how special characteristics of this population influenced study design, sampling, data collection, and interpretation. Sampling employed polling data to identify haredi concentrations. Despite haredim’s reputation for low survey participation, we achieved a 71-74% response rate (depending on the unknown eligibility of 24 phones never answered) in interviews conducted 2003-2004. We describe our systematic attention to special aspects of haredi culture such as: modesty and speech codes; the need for rabbinic endorsement; and the importance of female, haredi interviewers. This research was initiated and managed by a community-based women's health non-governmental organization (NGO), in partnership with trained researchers. Our experiences can guide others surveying insular communities, such as traditional Muslim and Christian societies.
Keywords: women's health; cross-cultural; ultra-Orthodox; survey research; haredi; cultural sensitivity.
Keywords: women's health; cross-cultural; ultra-Orthodox; survey research; haredi; cultural sensitivity.
Research Interests:
This paper presents a case example of the new “geometry of care” (Rier and Indyk, this volume), by examining selected examples from five facets of a program developed by the lead author and in operation since 1989. This program is... more
This paper presents a case example of the new “geometry of care” (Rier and Indyk, this volume), by examining selected examples from five facets of a program developed by the lead author and in operation since 1989. This program is designed to understand, build, revise, and maintain the organizational infrastructure with which to
link diverse players and sites, and combine these into a web for producing, assessing, and exchanging the information needed to combat HIV/AIDS. Each example demonstrates how opportunities were exploited for developing and linking resources within and between systems of care and prevention. The program began as an iterative and systems approach to improve access of high-risk, hard-to-reach inner
city New York populations to HIV/AIDS services, treatment, and research. The approach is also currently being further elaborated and applied in Argentina and India (see Boylan et al., this volume), and is adaptable to other local and global public health challenges (see Indyk & Rier, this volume)
link diverse players and sites, and combine these into a web for producing, assessing, and exchanging the information needed to combat HIV/AIDS. Each example demonstrates how opportunities were exploited for developing and linking resources within and between systems of care and prevention. The program began as an iterative and systems approach to improve access of high-risk, hard-to-reach inner
city New York populations to HIV/AIDS services, treatment, and research. The approach is also currently being further elaborated and applied in Argentina and India (see Boylan et al., this volume), and is adaptable to other local and global public health challenges (see Indyk & Rier, this volume)
Research Interests:
Abstract Background: Health policy-making, a complex, multi-factorial process, requires balancing conflicting values. A salient issue is public support for policies; however, one reason for limited impact of public opinion may be... more
Abstract
Background: Health policy-making, a complex, multi-factorial process, requires balancing conflicting values. A salient issue is public support for policies; however, one reason for limited impact of public opinion may be misperceptions of policy makers regarding public opinion. For example, empirical research is scarce on perceptions
of policy makers regarding public opinion on smoke-free public spaces.
Methods: Public desire for smoke-free air was compared with health policy advisor (HPA) perception of these desires. Two representative studies were conducted: one with the public (N = 505), and the other with a representative sample of members of Israel’s health-targeting initiative, Healthy Israel 2020 (N = 34), in December 2010. Corresponding questions regarding desire for smoke-free areas were asked. Possible smoke-free areas included: 100% smoke-free bars and pubs; entrances to health facilities; railway platforms; cars with children; college campuses; outdoor areas (e.g., pools and beaches); and common areas of multi-dweller apartment buildings. A 1–7
Likert scale was used for each measure, and responses were averaged into a single primary outcome, DESIRE. Our primary endpoint was the comparison between public preferences and HPA assessment of those preferences. In a secondary analysis, we compared personal preferences of the public with personal preferences of the HPAs for smoke-free air.
Results: HPAs underestimated public desire for smoke-free air (Public: Mean: 5.06, 95% CI:[4.94, 5.17]; HPA: Mean: 4.06, 95% CI:[3.61, 4.52]: p < .0001). Differences at the p = .05 level were found between HPA assessment and public preference for the following areas: 100% smoke-free bars and pubs; entrances to healthcare facilities; train platforms; cars carrying children; and common areas of multi-dweller apartment buildings. In our secondary comparison, HPAs more strongly preferred smoke-free areas than did the public (p < .0001).
Conclusions: Health policy advisors underestimate public desire for smoke-free air. Better grasp of public opinion by policy makers may lead to stronger legislation. Monitoring policy-maker assessment of public opinion may shed light on incongruities between policy making and public opinion. Further, awareness of policy-maker
misperceptions may encourage policy-makers to demand more accurate information before making policy.
Keywords: Health policy, Public opinion: Secondhand smoke exposure (SHS, SHSe), Tobacco smoke exposure, Smoke-free, Tobacco control
Background: Health policy-making, a complex, multi-factorial process, requires balancing conflicting values. A salient issue is public support for policies; however, one reason for limited impact of public opinion may be misperceptions of policy makers regarding public opinion. For example, empirical research is scarce on perceptions
of policy makers regarding public opinion on smoke-free public spaces.
Methods: Public desire for smoke-free air was compared with health policy advisor (HPA) perception of these desires. Two representative studies were conducted: one with the public (N = 505), and the other with a representative sample of members of Israel’s health-targeting initiative, Healthy Israel 2020 (N = 34), in December 2010. Corresponding questions regarding desire for smoke-free areas were asked. Possible smoke-free areas included: 100% smoke-free bars and pubs; entrances to health facilities; railway platforms; cars with children; college campuses; outdoor areas (e.g., pools and beaches); and common areas of multi-dweller apartment buildings. A 1–7
Likert scale was used for each measure, and responses were averaged into a single primary outcome, DESIRE. Our primary endpoint was the comparison between public preferences and HPA assessment of those preferences. In a secondary analysis, we compared personal preferences of the public with personal preferences of the HPAs for smoke-free air.
Results: HPAs underestimated public desire for smoke-free air (Public: Mean: 5.06, 95% CI:[4.94, 5.17]; HPA: Mean: 4.06, 95% CI:[3.61, 4.52]: p < .0001). Differences at the p = .05 level were found between HPA assessment and public preference for the following areas: 100% smoke-free bars and pubs; entrances to healthcare facilities; train platforms; cars carrying children; and common areas of multi-dweller apartment buildings. In our secondary comparison, HPAs more strongly preferred smoke-free areas than did the public (p < .0001).
Conclusions: Health policy advisors underestimate public desire for smoke-free air. Better grasp of public opinion by policy makers may lead to stronger legislation. Monitoring policy-maker assessment of public opinion may shed light on incongruities between policy making and public opinion. Further, awareness of policy-maker
misperceptions may encourage policy-makers to demand more accurate information before making policy.
Keywords: Health policy, Public opinion: Secondhand smoke exposure (SHS, SHSe), Tobacco smoke exposure, Smoke-free, Tobacco control
Research Interests:
SUMMARY. This paper examines adherence to AIDS treatment, focusing on the challenges posed by rapidly changing treatment protocols. We examine the evolving views of treatment adherence, and endorse the “concordance” approach. This... more
SUMMARY. This paper examines adherence to AIDS treatment, focusing on the challenges posed by rapidly changing treatment protocols.
We examine the evolving views of treatment adherence, and endorse the
“concordance” approach. This emphasizes collaboration and negotiation between provider and patient to formulate and maintain a manageable treatment regimen tailored to what the patient is ready, willing, and able to tolerate. Given the extreme rapidity with which treatment guidelines are revised or even reversed, the persistent uncertainty surrounding treatment risks and benefits, and the great variability in individuals’ ability to tolerate a given regimen, we propose the term “flexible rigidity” to describe the type of adherence best suited to AIDS treatment. We present an organizational approach to supporting the type of provider-patient relationships needed to improve treatment adherence that features treatment-readiness assessment and custom-tailoring of treatment for those at all stages of the treatment-readiness continuum. We note that this model could be applied as well to prevention and management of other chronic diseases.
We examine the evolving views of treatment adherence, and endorse the
“concordance” approach. This emphasizes collaboration and negotiation between provider and patient to formulate and maintain a manageable treatment regimen tailored to what the patient is ready, willing, and able to tolerate. Given the extreme rapidity with which treatment guidelines are revised or even reversed, the persistent uncertainty surrounding treatment risks and benefits, and the great variability in individuals’ ability to tolerate a given regimen, we propose the term “flexible rigidity” to describe the type of adherence best suited to AIDS treatment. We present an organizational approach to supporting the type of provider-patient relationships needed to improve treatment adherence that features treatment-readiness assessment and custom-tailoring of treatment for those at all stages of the treatment-readiness continuum. We note that this model could be applied as well to prevention and management of other chronic diseases.
Research Interests:
Are toxic-exposure epidemiologists influenced, when writing the “caveat” portion of their articles, by how the media, public, and courts might use their work? Qualitative interviews with 61 epidemiologists revealed that they relied on... more
Are toxic-exposure epidemiologists influenced, when writing the “caveat” portion of their articles, by how the media, public, and courts might use their work? Qualitative interviews with 61 epidemiologists revealed that they relied on caveats to manage “public risk”—inappropriate use of their work by nonscientists. However, few considered caveats effective for this task. Caveats may be more important for managing professional risk, as subjects used caveats to preempt criticism, to advertise their credibility, to adhere to conventions, to hedge, and to deflect attention from flaws in their articles. The data bear implications for the definition of science, the demarcation of scientists from nonscientists, and the issue of scientists' responsibility.
Research Interests:
Research Interests:
Page 1. Л Diagnosis for Our Times Alternative Health, from Lifeworld to Politics Matthew Schneirov and Jonathan David Qeczik ... A Diagnosis for Our Times Alternative Health, from Lifeworld to PoliticsMatthew Schneirov Jonathan David... more
Page 1. Л Diagnosis for Our Times Alternative Health, from Lifeworld to Politics Matthew Schneirov and Jonathan David Qeczik ... A Diagnosis for Our Times Alternative Health, from Lifeworld to PoliticsMatthew Schneirov Jonathan David Geczik State University Press of New York ...
Research Interests:
This paper examines how, on Internet HIV/AIDS support groups, participants discuss the ethics of disclosing HIV seropositivity to partners. The data consist of all mentions of disclosure culled from over 16,000 pages overall of posts from... more
This paper examines how, on Internet HIV/AIDS support groups, participants discuss the ethics of disclosing HIV seropositivity to partners. The data consist of all mentions of disclosure culled from over 16,000 pages overall of posts from 16 different groups, hosted on seven separate sites. The paper focuses on two main
questions. First, apart from providing support and information, did the groups also debate moral dilemmas (and, despite groups’ common perception as ‘safe spaces’ for non-judgmental exchanges, did these discussions include moral judgments and conflicts)? Secondly, did use of this new medium generate a new, alternative ethical discourse, or merely replicate existing discourses? The data demonstrate that online support groups did engage in debating, and trying verbally to enforce, certain views of the ethics of seropositivity disclosure. The most common view advocated full disclosure, though a range of positions existed.
Unlike with most online support groups described elsewhere, these discussions often included harshly-expressed moral judgments. The groups did not generate a truly new, alternative discourse, but served as clearinghouses for and transmitters of existing ‘off-line’ discourses, both mainstream and alternative.
Implications and limitations of the present study, and areas for further research, are discussed.
Keywords: Internet, support group, ethics, HIV
questions. First, apart from providing support and information, did the groups also debate moral dilemmas (and, despite groups’ common perception as ‘safe spaces’ for non-judgmental exchanges, did these discussions include moral judgments and conflicts)? Secondly, did use of this new medium generate a new, alternative ethical discourse, or merely replicate existing discourses? The data demonstrate that online support groups did engage in debating, and trying verbally to enforce, certain views of the ethics of seropositivity disclosure. The most common view advocated full disclosure, though a range of positions existed.
Unlike with most online support groups described elsewhere, these discussions often included harshly-expressed moral judgments. The groups did not generate a truly new, alternative discourse, but served as clearinghouses for and transmitters of existing ‘off-line’ discourses, both mainstream and alternative.
Implications and limitations of the present study, and areas for further research, are discussed.
Keywords: Internet, support group, ethics, HIV
Research Interests: Medical Sociology, Social Sciences, Bioethics, Internet Studies, Social Networking, and 13 moreVirtual Communities, HIV/AIDS, Computer-Mediated Communication, Political communication, Internet & Society, Political Identity, Online Media, Disclosure, Support groups, Media theory and Research, Internet support groups, Virtual Support Groups, and Mobile and Location-Based Media
Objective Secondhand smoke exposure (SHSe) harms adults and children. Though most governments are obliged by international health treaty to protect nonsmokers from SHSe, few adequately do so. Public opinion can provide a powerful mandate... more
Objective
Secondhand smoke exposure (SHSe) harms adults and children. Though most governments are obliged by international health treaty to protect nonsmokers from SHSe, few adequately do so. Public opinion can provide a powerful mandate for smoke-free policies, but a representative public voice is often absent from the political discussion. For example, following Cabinet approval of a national tobacco control plan, Israel remains embroiled in stormy debate about smoke-free legislation. This debate has unfolded without benefit of current empirical evidence on nationwide public support. The present study reports and assesses public opinion regarding smoke-free places.
Methods
A nationally representative survey (n = 505) was conducted in December, 2010. The response rate was 61%.
Results
Public opinion supports smoke-free air in many places. There was broad consensus among current, former, and never-smokers for smoke-free cars carrying children (94.4%), and smoke-free healthcare facility entrances (92.6%). A clear majority (67.0%) supportedcompletely smoke-free bars and pubs. Nearly half (47.3%) supported eliminating school staff smoking rooms.
Conclusions
These data strengthen the case for the recent government-approved tobacco control plan. Valid data regarding public opinion on tobacco control can facilitate passage and implementation of smoke-free legislation, thus speeding transition to smoke-free societies.
Keywords
• Secondhand smoke exposure (SHS;
• SHSe);
• Tobacco smoke exposure (TSE);
• Tobacco control;
• Public opinion;
• Health policy
Secondhand smoke exposure (SHSe) harms adults and children. Though most governments are obliged by international health treaty to protect nonsmokers from SHSe, few adequately do so. Public opinion can provide a powerful mandate for smoke-free policies, but a representative public voice is often absent from the political discussion. For example, following Cabinet approval of a national tobacco control plan, Israel remains embroiled in stormy debate about smoke-free legislation. This debate has unfolded without benefit of current empirical evidence on nationwide public support. The present study reports and assesses public opinion regarding smoke-free places.
Methods
A nationally representative survey (n = 505) was conducted in December, 2010. The response rate was 61%.
Results
Public opinion supports smoke-free air in many places. There was broad consensus among current, former, and never-smokers for smoke-free cars carrying children (94.4%), and smoke-free healthcare facility entrances (92.6%). A clear majority (67.0%) supportedcompletely smoke-free bars and pubs. Nearly half (47.3%) supported eliminating school staff smoking rooms.
Conclusions
These data strengthen the case for the recent government-approved tobacco control plan. Valid data regarding public opinion on tobacco control can facilitate passage and implementation of smoke-free legislation, thus speeding transition to smoke-free societies.
Keywords
• Secondhand smoke exposure (SHS;
• SHSe);
• Tobacco smoke exposure (TSE);
• Tobacco control;
• Public opinion;
• Health policy
Research Interests:
What happens when the scientific tradition of openness clashes with potential societal risks? The work of American toxic-exposure epidemiologists can attract media coverage and lead the public to change health practices, initiate... more
What happens when the scientific tradition of openness clashes with potential societal risks? The work of American toxic-exposure epidemiologists can attract media coverage and lead the public to change health practices, initiate lawsuits, or take other steps a study’s authors might consider unwarranted. This paper, reporting data from 61 semi-structured interviews with U.S. toxic-exposure epidemiologists, examines whether such possibilities shaped epidemiologists’ selection of journals for potentially-sensitive papers. Respondents manifested strong support for the norm of scientific openness, but a significant minority had or would/might, given the right circumstances, publish sensitive data in less-visible journals, so as to prevent unwanted media or public attention. Often, even those advocating such limited “burial” upheld openness, claiming that less-visible publication allowed them to avoid totally withholding the data from publication. However, 15% of the sample had or would, for the most sensitive types of data, withhold publication altogether. Rather than respondents explaining their actions in terms of an expected split between “pure science” and “social advocacy” models, even those publishing in the more-visible journals often described their actions in terms of their “responsibility”. Several practical limitations (particularly involving broader access to scientific literature via the Internet) of the strategy of burial are discussed, and some recommendations are offered for scientists, the media, and the public.
KEYWORDS: Publication; scientist; responsibility; ethics; epidemiology
KEYWORDS: Publication; scientist; responsibility; ethics; epidemiology
Research Interests: Medical Sociology, Ethics, Epidemiology, Science Communication, Research Ethics, and 11 moreComputer Networks, Rhetoric of Science, Sociology of Risk, Science, Technology and Society, Politics And Sociology Of Risk, Sociology of Science, Public Health, Databases, Software, Research and Publications, and Science and Technology Studies
Are toxic-exposure epidemiologists influenced, when writing the “caveat’ portion of their papers, by how the media, public, and courts might use their work? Qualitative interviews with 61 epidemiologists revealed that they relied on... more
Are toxic-exposure epidemiologists influenced, when writing the “caveat’ portion of their papers, by how the media, public, and courts might use their work? Qualitative interviews with 61 epidemiologists revealed that they relied on caveats to manage “public risk”--inappropriate use of their work by non-scientists. However, few considered caveats effective for this task. Caveats may be more important for managing professional risk, for subjects used caveats to: preempt criticism; advertise their credibility; adhere to conventions; hedge; and deflect attention from flaws in their papers. The data bear implications for the definition of "science," demarcation of scientists from non-scientists, and scientists' responsibility.
Research Interests:
Research Interests:
Existing sociological studies of critical illness deal mainly with providers and families, but seldom with patients, themselves. Moreover, most of the literature on the patient's experience involves chronic illness. Based on the author's... more
Existing sociological studies of critical illness deal mainly with providers and families, but seldom with patients, themselves. Moreover, most of the literature on the patient's experience involves chronic illness. Based on the author's experience as an intensive care unit (ICU) patient, this paper demonstrates that certain concerns of the post-Parsonian literature, such as full disclosure of information to patients and patients' negotiation and collaboration with physicians, are of minimal relevance for critically ill patients. This paper also discusses the notebook the author used in the ICU to communicate while on a respirator, thus unintentionally leaving a concurrent record of his experience, in a form of "inadvertent ethnography.” This allowed him to reconstruct experiences rarely accessible to sociologists. Such notebooks can help us construct accounts of the ICU patient's experience, and move us towards a sociology of the critically ill patient. Potential topics for this new research area are suggested.
KEY WORDS: critical illness; intensive care unit (ICU); Parsons; empowerment; disclosure
KEY WORDS: critical illness; intensive care unit (ICU); Parsons; empowerment; disclosure
Research Interests: Medical Sociology, New Media, Health Communication, Medical Education, Embodiment, and 15 moreDialogue, The Body, Empowerment, Patient Provider Communication, Health, Doctor-patient communication, Illness narratives, the experience of chronic diseases, organ donation and transplantation, HIV/AIDS, diabetes, genetic diseases, and medicalisation., Patient Experiences, Patient Involvement, Talcott Parsons, ICU, INTENSIVE CARE, Parsons, The Sick Role, and Clinical Encounter
This paper examines how, on Internet HIV/AIDS support groups, participants discuss the ethics of disclosing HIV seropositivity to partners. The data consist of all mentions of disclosure culled from over 16,000 pages overall of posts from... more
This paper examines how, on Internet HIV/AIDS support groups, participants discuss the ethics of disclosing HIV seropositivity to partners. The data consist of all mentions of disclosure culled from over 16,000 pages overall of posts from 16 different groups, hosted on seven separate sites. The paper focuses on two main questions. First, apart from providing support and information, did the groups also debate moral dilemmas (and, despite groups’ common perception as ‘safe spaces’ for non-judgmental exchanges, did these discussions include moral judgments and conflicts)? Second, did use of this new medium generate a new, alternative ethical discourse, or merely replicate existing discourses? The data demonstrate that online support groups did engage in debating, and trying verbally to enforce, certain views of the ethics of seropositivity disclosure. The most common view advocated full disclosure, though a range of positions existed. Unlike with most online support groups described elsewhere, these discussions often included harshly-expressed moral judgments. The groups did not generate a truly new, alternative discourse, but served as clearinghouses for and transmitters of existing ‘off-line’ discourses, both mainstream and alternative. Implications and limitations of the present study, and areas for further research, are discussed.
Research Interests: Ethics, Social Sciences, Internet Studies, Social Networking, Virtual Communities, and 15 moreHIV/AIDS, Computer-Mediated Communication, Political communication, Internet & Society, HIV Disclosure, Medical errors, Political Identity, Online Media, Disclosure, Consent, Capacity, Media theory and Research, Mobile and Location-Based Media, Teaching of Ethics, and Medical Ethics Generally
Research Interests:
Existing studies of gender and lifecourse in science have not focused on publication decisions, and even less so for publication of studies liable to attract media and public attention. This paper is based on semi-structured interviews... more
Existing studies of gender and lifecourse in science have not focused on publication decisions, and even less so for publication of studies liable to attract media and public attention. This paper is based on semi-structured interviews with 61 U.S. toxic-exposure epidemiologists about their publication decisions. It examines gender differences in how scientists, as they move through the lifecourse, approach publication decisions for research bearing potential societal implications. Though preliminary, the data suggest that males are overall more comfortable than females with pursuing visible publication and handling media coverage. However, males and females may begin to crisscross over time. Specifically, males started out in publishing potentially controversial papers in visible journals likely to attract media and public attention, but grew more cautious with age, rank, and experience. Amongst females, the situation was less homogenous: while some (often, the most elite) reported patterns similar to males’, more reported following the reverse pattern as they moved through the lifecourse. These differences may stem in part from gender differences in self-confidence, risk-taking, and competitiveness. The wider significance and limitations of the data are discussed, and lines of further research (including nine testable hypotheses) are suggested.
KEYWORDS:
Gender; Lifecourse; Risk-taking; Epidemiology; Scientific Publication; Media
KEYWORDS:
Gender; Lifecourse; Risk-taking; Epidemiology; Scientific Publication; Media
Research Interests: Geology, Gender Studies, Ethics, Horticulture, Natural Resources, and 15 moreSociology of Knowledge, Computer Networks, Plant Biology, Rhetoric of Science, Sociology of Risk, Gender, Science, Technology and Society, Politics And Sociology Of Risk, Sociology of Science, Lifecourse studies, Databases, Software, Environmental Sciences, Scientific Communications, and Science and Technology Studies
Semi-structured interviews (n=61) with toxic-exposure epidemiologists indicate that those in government settings (CDC, state health departments, and NIH) were more aware of and responsive to societal consequences of their publications... more
Semi-structured interviews (n=61) with toxic-exposure epidemiologists indicate that those in government settings (CDC, state health departments, and NIH) were more aware of and responsive to societal consequences of their publications than were those in universities. The NIH data were surprising, given NIH’s ivory tower image, but in part appear to stem from a broad trend towards greater accountability in science. Other worksite influences included: "institutional voice": epidemiologists from NIH or CDC were aware of speaking in the "voice of the government". There was also limited evidence suggesting the importance of local unit environment: investigators in the same research unit often reported being influenced by the tone set by the unit chief and colleagues. This preliminary study suggests that work-setting influences how epidemiologists define and execute their ethical responsibilities towards social consequences of their work, and generates questions and five testable hypotheses for future empirical research.
KEYWORDS: Toxic-exposure epidemiology; Work-setting; Scientific responsibility; Scientific publication; Media.
KEYWORDS: Toxic-exposure epidemiology; Work-setting; Scientific responsibility; Scientific publication; Media.
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This paper examines adherence to AIDS treatment, focusing on the challenges posed by rapidly changing treatment protocols. We examine the evolving views of treatment adherence, and endorse the "concordance" approach. This emphasizes... more
This paper examines adherence to AIDS treatment, focusing on the challenges posed by rapidly changing treatment protocols. We examine the evolving views of treatment adherence, and endorse the "concordance" approach. This emphasizes collaboration and negotiation between provider and patient to formulate and maintain a manageable treatment regimen tailored to what the patient is ready, willing, and able to tolerate. Given the extreme rapidity with which treatment guidelines are revised or even reversed, the persistent uncertainty surrounding treatment risks and benefits, and the great variability in individuals' ability to tolerate a given regimen, we propose the term "flexible rigidity" to describe the type of adherence best suited to AIDS treatment. We present an organizational approach to supporting the type of provider-patient relationships needed to improve treatment adherence that features treatment-readiness assessment and custom-tailoring of treatment for those at all stages of the treatment-readiness continuum. We note that this model could be applied as well to prevention and management of other chronic diseases.
Keywords: AIDS treatment; adherence; concordance; chronic illness; clinical treatment guidelines.
Keywords: AIDS treatment; adherence; concordance; chronic illness; clinical treatment guidelines.
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Even preliminary toxic-exposure epidemiology papers can spark "media scares" and questionable reactions amongst the public. Concerns for the social consequences of publication can lead epidemiologists--despite the advantages of visible... more
Even preliminary toxic-exposure epidemiology papers can spark "media scares" and questionable reactions amongst the public. Concerns for the social consequences of publication can lead epidemiologists--despite the advantages of visible publication--to choose a more obscure outlet for potentially sensitive studies. Interviews with 61 U.S. toxic-exposure epidemiologists indicate that investigators generally sought visible journals to transmit their work to the widest relevant audience. Yet up to 36%-46% of this sample sometimes have sought or would seek to keep their research from a public who, they feared, might misuse their results. Implications for the boundaries between science and society (including evidence of hidden scientific activism and ‘‘inert’’ public activism) are discussed, and six hypotheses for further research are proposed.
KEYWORDS: Epidemiology; publication; scientific responsibility; media; toxic exposure
KEYWORDS: Epidemiology; publication; scientific responsibility; media; toxic exposure
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Internet support groups are widely considered friendly, non-judgmental "safe spaces" for exchanging support and information. However, online HIV/AIDS support group discussions of seropositivity disclosure ethics show that morality is... more
Internet support groups are widely considered friendly, non-judgmental "safe spaces" for exchanging support and information. However, online HIV/AIDS support group discussions of seropositivity disclosure ethics show that morality is hotly debated, sometimes in very harsh, judgmental terms. This paper is based on a wider study of over 16,000 pages downloaded from 16 different HIV/AIDS support groups. It presents a single discussion "thread" in which group pressure persuades a fellow-participant to retreat (at least verbally) from initial unwillingness to disclose his seropositivity to partners. This paper demonstrates the impact of group discussions, and their potential as agents of change. The Discussion considers why such examples are rare, and what conditions might produce them. It locates this thread within the tradition of community empowerment, and assesses the suitability of Habermas’ concept of the ideal speech situation to understanding online support and discourse. Implications for public health are discussed, as are study limitations.
Keywords: Internet; support group; HIV/AIDS; Habermas; ethics; medical sociology
Keywords: Internet; support group; HIV/AIDS; Habermas; ethics; medical sociology
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This paper describes special issues involved in planning and conducting a national telephone health survey (n = 459) of an insular, deeply traditional religious population, haredi (ultra-Orthodox Jewish) Israeli women. The paper discusses... more
This paper describes special issues involved in planning and conducting a national telephone health survey (n = 459) of an insular, deeply traditional religious population, haredi (ultra-Orthodox Jewish) Israeli women. The paper discusses how special characteristics of this population influenced study design, sampling, data collection, and interpretation. Sampling employed polling data to identify haredi concentrations. Despite haredim’s reputation for low survey participation, we achieved a 71-74% response rate (depending on the unknown eligibility of 24 phones never answered) in interviews conducted 2003-2004. We describe our systematic attention, throughout the study, to special aspects of haredi culture such as: its calendar; modesty and speech codes; the need for rabbinic endorsement; and the importance of female, haredi interviewers. This research was initiated and managed by a community-based women's health non-governmental organization (NGO), in partnership with trained researchers. Our experiences can guide others surveying insular communities, such as traditional Muslim and Christian societies.
Keywords: women's health; cross-cultural; ultra-Orthodox; survey research; haredi; cultural sensitivity
Keywords: women's health; cross-cultural; ultra-Orthodox; survey research; haredi; cultural sensitivity
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Like the practice of clinical medicine, medical research and the knowledge it generates involve their own risks. This paper examines various societal and career risks of working with certain types of medical knowledge, and discusses... more
Like the practice of clinical medicine, medical research and the knowledge it generates involve their own risks. This paper examines various societal and career risks of working with certain types of medical knowledge, and discusses empirical research on gender and risk-taking in science. It considers the questions this literature raises regarding decision-making about risky knowledge, as women increasingly enter new roles as researchers, consultants, regulators, and bureaucrats in science and medicine. In particular, it focuses on the relative hesitance of women scientists to take risks in their careers, and asks whether this predicts how they will handle risky knowledge as they enter new positions of decision-making authority in science and medicine. Limitations in existing data preclude firm predictions, but the paper sets out numerous questions for further study.
Keywords: Gender; risk-taking; scientific knowledge; medical research; policy-making
Keywords: Gender; risk-taking; scientific knowledge; medical research; policy-making
Research Interests: Gender Studies, Ethics, Science Communication, Research Ethics, Sociology of Knowledge, and 16 moreMentoring, Computer Networks, Sociology of Risk, Gender, Science, Technology and Society, Sociology of Science, Databases, Intersectionality, Software, Work Life Balance, Faculty Diversity, Professional Women, Women and Minority In STEM Fields, Pipeline Issues, Career Progression In Science and Engineering, and Science and Technology Studies
Research Interests: Medical Sociology, Ethics, Epidemiology, Science Communication, Research Ethics, and 11 moreCorporate Communication, Computer Networks, Sociology of Risk, Science, Technology and Society, Technical Writing, Sociology of Science, Online Journalism, Databases, Software, Communication Research, and Science and Technology Studies
... Kenen 1996). More recently, Arribas-Ayllon, Sarangi, and Clarke (2008) have detailed the dilemmas parents face regarding assuming or attributing responsibility for disclosing their chil-dren&amp;#x27;s genetic test results. A... more
... Kenen 1996). More recently, Arribas-Ayllon, Sarangi, and Clarke (2008) have detailed the dilemmas parents face regarding assuming or attributing responsibility for disclosing their chil-dren&amp;#x27;s genetic test results. A corollary ...
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Research Interests:
Page 1. Л Diagnosis for Our Times Alternative Health, from Lifeworld to Politics Matthew Schneirov and Jonathan David Qeczik ... A Diagnosis for Our Times Alternative Health, from Lifeworld to PoliticsMatthew Schneirov Jonathan David... more
Page 1. Л Diagnosis for Our Times Alternative Health, from Lifeworld to Politics Matthew Schneirov and Jonathan David Qeczik ... A Diagnosis for Our Times Alternative Health, from Lifeworld to PoliticsMatthew Schneirov Jonathan David Geczik State University Press of New York ...
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Research Interests:
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