Constructing a Web.Stephanie A. Welcomer,Philip L. Cochran,Gordon Rands &Mark Haggerty -2003 -Business and Society 42 (1):43-82.detailsIn this single industry study, the authors examine relationships between forest products companies in Maine and their stakeholders. The research question, why do firms work with stakeholders, is examined from both instrumental and normative perspectives. Specifically, it is hypothesized that stakeholder power and corporate social responsiveness affect the degree to which firms have working relationships with stakeholders. The study found support for the impact of the firm’s perception of stakeholder power on the strength of its relationships with stakeholders. Most notably, (...) it also found support for the firm’s corporate social responsiveness on the strength of its stakeholder relations, indicating that firms do work with stakeholders from both instrumental and normative bases. (shrink)
Stakeholders’ Stories.Stephanie A. Welcomer -2006 -Proceedings of the International Association for Business and Society 17:271-273.detailsNarrative analysis offers a compelling platform that organizations can use to engage with those whose world and worldview may be radically different. A narrative approach places stories as vehicles through which individuals, organizations, and groups socially construct their identity, culture, land, and their inter-relationships through time. Because part of the stakeholder approach includes consideration of stakeholders’ physical, relational, and ethical experiences, narratives hold great promise.
Participant Reactions to a Literacy-Focused, Web-Based Informed Consent Approach for a Genomic Implementation Study.Stephanie A. Kraft,Kathryn M. Porter,Devan M. Duenas,Claudia Guerra,Galen Joseph,Sandra Soo-Jin Lee,Kelly J. Shipman,Jake Allen,Donna Eubanks,Tia L. Kauffman,Nangel M. Lindberg,Katherine Anderson,Jamilyn M. Zepp,Marian J. Gilmore,Kathleen F. Mittendorf,Elizabeth Shuster,Kristin R. Muessig,Briana Arnold,Katrina A. B. Goddard &Benjamin S. Wilfond -2021 -AJOB Empirical Bioethics 12 (1):1-11.detailsBackground: Clinical genomic implementation studies pose challenges for informed consent. Consent forms often include complex language and concepts, which can be a barrier to diverse enrollment, and these studies often blur traditional research-clinical boundaries. There is a move toward self-directed, web-based research enrollment, but more evidence is needed about how these enrollment approaches work in practice. In this study, we developed and evaluated a literacy-focused, web-based consent approach to support enrollment of diverse participants in an ongoing clinical genomic implementation study. (...) Methods: As part of the Cancer Health Assessments Reaching Many (CHARM) study, we developed a web-based consent approach that featured plain language, multimedia, and separate descriptions of clinical care and research activities. CHARM offered clinical exome sequencing to individuals at high risk of hereditary cancer. We interviewed CHARM participants about their reactions to the consent approach. We audio recorded, transcribed, and coded interviews using a deductively and inductively derived codebook. We reviewed coded excerpts as a team to identify overarching themes. Results: We conducted 32 interviews, including 12 (38%) in Spanish. Most (69%) enrolled without assistance from study staff, usually on a mobile phone. Those who completed enrollment in one day spent an average of 12 minutes on the consent portion. Interviewees found the information simple to read but comprehensive, were neutral to positive about the multimedia support, and identified increased access to testing in the study as the key difference from clinical care. Conclusions: This study showed that interviewees found our literacy-focused, web-based consent approach acceptable; did not distinguish the consent materials from other online study processes; and valued getting access to testing in the study. Overall, conducting empirical bioethics research in an ongoing clinical trial was useful to demonstrate the acceptability of our novel consent approach but posed practical challenges. (shrink)
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Respect and Trustworthiness in the Patient-Provider-Machine Relationship: Applying a Relational Lens to Machine Learning Healthcare Applications.Stephanie A. Kraft -2020 -American Journal of Bioethics 20 (11):51-53.detailsHealthcare delivery is an interpersonal endeavor. In every clinical interaction, providers have an ethical obligation to show respect to their patients, and ideally over time these interactions lea...
Cultural Psychology as a Bridge Between Anthropology and Cognitive Science.Stephanie A. Fryberg -2012 -Topics in Cognitive Science 4 (3):437-444.detailsThe theory and methods of cultural psychology begin with the assumption that psychological processes are socioculturally and historically grounded. As such, they offer a new approach for understanding the diversity of human functioning because they (a) question the presumed neutrality of the majority group perspective; (b) take the target’s point-of-view (i.e., what it means to be a person in a particular context); (c) assume that there is more than one viable way of being a competent or effective person; and (d) (...) provide a road map for understanding and reducing social inequities. As illustrated in this essay, a cultural psychological approach provides a bridge between anthropology and the cognitive sciences, and in so doing it offers an alternative set of explanations and interventions for group differences. (shrink)
Conceptualising the biology-culture relationship in emotion: An analogy with gender.Stephanie A. Shields -1990 -Cognition and Emotion 4 (4):359-374.detailsRecent conceptual developments in the psychology of gender can be productively applied to understanding two facets of emotion: the biological manifestation of emotion and the psychological embodiment of emotion. Gender researchers distinguish between sex, the biologically based categories of female and male and gender, the psychological features that are often associated with biological states and that involve social categories rather than biological categories. In other words, the term sex is used to refer to the physical fact of primary and secondary (...) sex characteristics; the term gender is used to refer to a psychological and cultural construct, a loose translation of sex into social terms. It is proposed that two analogous facets of emotion can be identified, namely, one which is comprised of emotion's hardwired, pan-cultural, developmentally persistent qualities, the analogue to sex. The second, constructed aspect of emotion is the analogue to gender. Six dimensions on which sex and gender can be contrasted are described, and the application of each to the study of emotion is discussed. (shrink)
Promoting Disclosure and Understanding in Informed Consent: Optimizing the Impact of the Common Rule “Key Information” Requirement.Stephanie A. Kraft,Elliott M. Weiss &Kathryn M. Porter -2021 -American Journal of Bioethics 21 (5):70-72.detailsMillum and Bromwich provide a thorough and thoughtful analysis of what is required for sufficient informed consent, offering distinct conceptualizations of the ethical requirements of disclo...
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Stepping Into a Map: Initial Heading Direction Influences Spatial Memory Flexibility.Stephanie A. Gagnon,Tad T. Brunyé,Aaron Gardony,Matthijs L. Noordzij,Caroline R. Mahoney &Holly A. Taylor -2014 -Cognitive Science 38 (2):275-302.detailsLearning a novel environment involves integrating first-person perceptual and motoric experiences with developing knowledge about the overall structure of the surroundings. The present experiments provide insights into the parallel development of these egocentric and allocentric memories by intentionally conflicting body- and world-centered frames of reference during learning, and measuring outcomes via online and offline measures. Results of two experiments demonstrate faster learning and increased memory flexibility following route perspective reading (Experiment 1) and virtual navigation (Experiment 2) when participants begin exploring (...) the environment on a northward (vs. any other direction) allocentric heading. We suggest that learning advantages due to aligning body-centered (left/right/forward/back) with world-centered (NSEW) reference frames are indicative of three features of spatial memory development and representation. First, memories for egocentric and allocentric information develop in parallel during novel environment learning. Second, cognitive maps have a preferred orientation relative to world-centered coordinates. Finally, this preferred orientation corresponds to traditional orientation of physical maps (i.e., north is upward), suggesting strong associations between daily perceptual and motor experiences and the manner in which we preferentially represent spatial knowledge. (shrink)
Is It a Name or a Fact? Disambiguation of Reference Via Exclusivity and Pragmatic Reasoning.Stephanie A. Malone,Marina Kalashnikova &Erin M. Davis -2016 -Cognitive Science 40 (8):2095-2107.detailsAdults reason by exclusivity to identify the meanings of novel words. However, it is debated whether, like children, they extend this strategy to disambiguate other referential expressions. To further inform this debate, this study tested 41 adults on four conditions of a disambiguation task: label/label, fact/fact, label/fact, and fact/label. Participants also provided a verbal explanation for their referent selections to tease apart the underlying processes. Results indicated that adults successfully discerned the target object in the label/label and label/fact condition, yet (...) not the remaining two conditions. Verbal reports indicated that the strategy utilized to disambiguate differed depending upon communicative context. These findings confirm that the tendency to reason by exclusivity becomes restricted to word-learning situations with growing linguistic and communicative experience. (shrink)
Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.Stephanie A. Kraft,Mildred K. Cho,Katherine Gillespie,Meghan Halley,Nina Varsava,Kelly E. Ormond,Harold S. Luft,Benjamin S. Wilfond &Sandra Soo-Jin Lee -2018 -American Journal of Bioethics 18 (4):3-20.detailsWith the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on (...) these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: Address the role of history and experience on trust, engage concerns about potential group harm, address cultural values and communication barriers, and integrate patient values and expectations into oversight and governance structures. (shrink)
Respecting Donor-Recipient Relationships in Research Decision-Making Commentary on: When Living Donor and Kidney Transplant Recipient Are Both Research Subjects.Stephanie A. Kraft -2021 -American Journal of Bioethics 21 (4):112-114.detailsEthical issues in biomedical research are traditionally examined as distinct from those of clinical care. However, this traditional framing may obscure questions of equity and fairness in both rese...
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On the function of saṁhitā in the Saṁhitā Upaniṣad.Stephanie A. Majcher -2022 -Journal of Indian Philosophy 50 (3):447-468.detailsThe Saṁhitā Upaniṣad [SU] is a little-known Vedic text that presents ‘typical’ Upaniṣadic teachings on the truth of identity alongside seemingly out-of-place descriptions of rites used to protect oneself against enemies and even against death. The difference between these contents is striking, but what it has to tell us about the SU’s main concerns is vulnerable to historical and text critical methods that rely on structure, style, and linguistic archaism to divide texts into discrete strata. What if the modern text (...) critical practice of individually identifying and classifying textual contents obscures the use and meaning of the word saṁhitā in the SU? Is it possible that the SU’s diverse contents are intrinsically related? This article explores these questions through a close examination of a sequence of passages illustrating the contrast that has led previous scholars to see the SU as miscellaneous in character and lacking internal coherence. Through this examination, I identify a wider context for saṁhitā in the specific relationship the SU depicts between the person and speech. I argue that the SU’s treatment of saṁhitā draws upon an understanding of recitation in the perspective of one’s vulnerability and the dynamics involved in developments of personhood. These findings allow the SU to emerge as an intriguing and coherent text that merits closer examination and establishes a promising approach for the study of the R̥gvedic Āraṇyakas. (shrink)
Demonstrating ‘respect for persons’ in clinical research: findings from qualitative interviews with diverse genomics research participants.Stephanie A. Kraft,Erin Rothwell,Seema K. Shah,Devan M. Duenas,Hannah Lewis,Kristin Muessig,Douglas J. Opel,Katrina A. B. Goddard &Benjamin S. Wilfond -2021 -Journal of Medical Ethics 47 (12):e8-e8.detailsThe ethical principle of ‘respect for persons’ in clinical research has traditionally focused on protecting individuals’ autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals’ rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English or Spanish (...) about their experiences with respect in the study and perceptions of how researchers in a hypothetical observational study could convey respect or a lack thereof. Most interviewees were female, identified as Hispanic/Latino or non-Hispanic white, reported annual household income under US$60 000 and did not have a Bachelor’s degree ; 30% had limited health literacy. We identified four key domains for demonstrating respect: personal study team interactions, with an emphasis on empathy, appreciation and non-judgment; study communication processes, including following up and sharing results with participants; inclusion, particularly ensuring materials are understandable and procedures are accessible; and consent and authorisation, including providing a neutral informed consent and keeping promises regarding privacy protections. While the experience of respect is inherently subjective, these findings highlight four key domains that may meaningfully demonstrate respect to potential and current research participants. Further empirical and normative work is needed to substantiate these domains and evaluate how best to incorporate them into the practice of research. (shrink)
Review of 'Ethics and AIDS in Africa: The Challenge to Our Thinking' by Anton A. van Niekerk and Loretta M. Kopelman (Eds). [REVIEW]Stephanie A. Nixon &Nkosinathi Ngcobo -2007 -Philosophy, Ethics, and Humanities in Medicine 2:1.detailsBook Review of 'Ethics and AIDS in Africa: The Challenge to Our Thinking' By Anton A. van Niekerk and Loretta M. Kopelman (Eds).
Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data‐Sharing Landscape.Stephanie A. Kraft &Kathleen F. Mittendorf -2024 -Hastings Center Report 54 (S2):73-83.detailsScientific data‐sharing and open science initiatives are increasingly important mechanisms for advancing the impact of genomic research. These mechanisms are being implemented as growing attention is paid to the need to improve the inclusion of research participants from marginalized and underrepresented groups. Together, these efforts aim to promote equitable advancements in genomic medicine. However, if not guided by community‐informed protections, these efforts may harm the very participants and communities they aim to benefit. This essay examines potential benefits and harms of (...) open science and explores how to advance a more just vision of open science in genomics. Drawing on relational ethics frameworks, we argue that researchers should consider their obligations to participants as well as the broader communities that are impacted by their research. We propose eight strategies to provide a foundation of practical steps for researchers to reduce the possibility of harms stemming from open science and to work toward genomic justice. (shrink)
Fostering Relationships in Pediatric Oncology Research: A Relational Ethics Approach to Clinically Integrated Research.Stephanie A. Kraft &Brittany M. Lee -2021 -American Journal of Bioethics 21 (4):85-88.detailsEthical issues in biomedical research are traditionally examined as distinct from those of clinical care. However, this traditional framing may obscure questions of equity and fairness in both rese...
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There’s No Crying in Baseball, or Is There? Male Athletes, Tears, and Masculinity in North America.Heather J. MacArthur &Stephanie A. Shields -2015 -Emotion Review 7 (1):39-46.detailsWe explore men’s negotiation of emotional expression within larger social discourses around masculinity. Drawing on the phenomenon of men’s crying within the competitive sports context, we demonstrate that although the prevailing image of men’s emotion is one of constricted expression and experience, inexpressivity is representative neither of typical nor ideal masculinity in contemporary dominant culture. We first review the literature on prevailing cultural beliefs about normative male emotional expression, then focus on literature specific to men’s tears. Turning to a discussion (...) of masculinity and sports participation, we offer possible explanations for why counter normative emotional expressions may be particularly prevalent and public in the context of men’s competitive sports, despite wider cultural discourses that appear to discourage men’s openly expressive behavior. (shrink)
Feminist Online Interviewing: Engaging Issues of Power, Resistance and Reflexivity in Practice.Stephanie A. Hamel &Jasmine R. Linabary -2017 -Feminist Review 115 (1):97-113.detailsThis paper is a response to scholars who have called for exploring and interrogating new strategies of data collection and new approaches to more traditional methods, such as interviewing in the context of the internet. Drawing on feminist standpoint theory, ‘reflexive email interviewing’ is proposed as a method for feminist research. The method is illustrated using a recent case study of email interviews with self-identified women who are members of World Pulse, an online community that aims to unite and amplify (...) women's voices worldwide. Through this case study, issues of power and resistance in the researcher/researched relationship and of participant reflexivity are interrogated. Lastly, criteria for reflexive email interviewing are proposed, including 1) strategies to interrogate and disrupt power hierarchies within the research process, 2) researcher reflexivity as a continuous part of the research process, and 3) continued invitations for participants to directly reflect on and respond to the research process. Reflexive questions are offered for researchers to use during research design and in each phase of their research process to ensure reflexivity is achieved. (shrink)
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Patient priorities for fulfilling the principle of respect in research: findings from a modified Delphi study.Stephanie A. Kraft,Devan M. Duenas &Seema K. Shah -2023 -BMC Medical Ethics 24 (1):1-11.detailsBackground Standard interpretations of the ethical principle of respect for persons have not incorporated the views and values of patients, especially patients from groups underrepresented in research. This limits the ability of research ethics scholarship, guidance, and oversight to support inclusive, patient-centered research. This study aimed to identify the practical approaches that patients in community-based settings value most for conveying respect in genomics research. Methods We conducted a 3-round, web-based survey using the modified Delphi technique to identify areas of agreement (...) among English-speaking patients at primary care clinics in Washington State and Idaho who had a personal or family history of cancer. In Round 1, respondents rated the importance of 17 items, identified in prior qualitative work, for feeling respected. In Round 2, respondents re-rated each item after reviewing overall group ratings. In Round 3, respondents ranked a subset of the 8 most highly rated items. We calculated each item’s mean and median rankings in Round 3 to identify which approaches were most important for feeling respected in research. Results Forty-one patients consented to the survey, 21 (51%) completed Round 1, and 18 (86% of Round 1) completed each of Rounds 2 and 3. Two sets of rankings were excluded from analysis as speed of response suggested they had not completed the Round 3 ranking task. Respondents prioritized provision of study information to support decision-making (mean ranking 2.6 out of 8; median ranking 1.5) and interactions with research staff characterized by kindness, patience, and a lack of judgment (mean ranking 2.8; median ranking 2) as the most important approaches for conveying respect. Conclusions Informed consent and interpersonal interactions are key ways that research participants experience respect. These can be supported by other approaches to respecting participants, especially when consent and/or direct interactions are infeasible. Future work should continue to engage with patients in community-based settings to identify best practices for research without consent and examine unique perspectives across clinical and demographic groups in different types of research. (shrink)
What Is the Buzz About Iconicity? How Iconicity in Caregiver Speech Supports Children's Word Learning.Lynn K. Perry,Stephanie A. Custode,Regina M. Fasano,Brittney M. Gonzalez &Jordyn D. Savy -2021 -Cognitive Science 45 (4):e12976.detailsOne cue that may facilitate children's word learning is iconicity, or the correspondence between a word's form and meaning. Some have even proposed that iconicity in the early lexicon may serve to help children learn how to learn words, supporting the acquisition of even noniconic, or arbitrary, word–referent associations. However, this proposal remains untested. Here, we investigate the iconicity of caregivers’ speech to young children during a naturalistic free‐play session with novel stimuli and ask whether the iconicity of caregivers’ speech (...) facilitates children's learning of the noniconic novel names of those stimuli. Thirty‐four 1.5‐2‐year‐olds (19 girls; half monolingual English learners and half bilingual English‐Spanish learners) participated in a naturalistic free‐play task with their caregivers followed by a test of word‐referent retention. We found that caregivers’ use of iconicity, particularly in utterances in which they named the novel stimuli, was associated with the likelihood that children learned that novel name. This result held even when controlling for other factors associated with word learning, such as the concreteness and frequency of words in caregiver speech. Together, the results demonstrate that iconicity not only can serve to help children identify the referent of novel words (as in previous research) but can also support their ability to retain even noniconic word‐referent mappings. (shrink)