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1.
Digit Soc ; 1(3): 27, 2022.
Article in English | MEDLINE | ID: mdl-36457897

ABSTRACT

In the current post-GDPR landscape, privacy notices have become ever more prevalent on our phones and online. However, these notices are not well suited to their purpose of helping users make informed decisions. I suggest that instead of utilizing notice to elicit informed consent, we could repurpose privacy notices to create the space for more meaningful, value-centered user decisions. Value-centered privacy decisions, or those that accurately reflect who we are and what we value, encapsulate the intuitive role of personal values in data privacy decisions. To explore how we could design for such decisions, I utilize Suzy Killmister's Four-Dimensional Theory of Autonomy (4DT) to operationalize value-centered privacy decisions. I then utilize 4DT to help design a system-called a value-centered privacy assistant (VcPA)-that could help create the space for value-centered data privacy decisions using privacy notices. Using this 4DT lens, I further assess the degree that an existing technology, personalized privacy assistants (PPAs), use notices in a manner that allows for value-centered decision-making. I lastly utilize insights from the PPA assessment to inform the design of a VcPA, concluding that a VcPA could utilize notices to assist users in value-centered app selection and in other data privacy decisions.

2.
J Cyst Fibros ; 20(3): 443-451, 2021 05.
Article in English | MEDLINE | ID: mdl-33303364

ABSTRACT

BACKGROUND: Organoid technology is emerging rapidly as a valuable tool for precision medicine, particularly in the field of Cystic Fibrosis (CF). However, biobank storage and use of patient-derived organoids raises specific ethical and practical challenges that demand sound governance. We examined the perspectives of professionals affiliated with CF or organoids on the ethical aspects of organoid biobanking for CF precision medicine. By conducting this study parallel to the process of innovation and development of organoid biobanking, its findings are valuable for the design of responsible governance frameworks. METHODS: To identify relevant themes and attitudes we conducted 21 semi-structured qualitative interviews with professionals in the field of organoid technology, biobanking, or CF research and care. RESULTS: We identified three key challenges, as well as the suggestions of professionals on how to address them: (1) The challenges associated with commercial involvement, trust, and ownership, (2) Navigating the blurring boundary between research and clinical care, (3) Appropriate approaches to the informed consent procedure. CONCLUSION: Sound governance of organoid biobanks aimed at precision medicine requires coming to terms with the fact that its stakeholders no longer belong to separate domains. Responsible governance should be aimed at finding a sound, context-sensitive balance between integration of ongoing co-operation and mutual consideration of interests, and maintaining a feasible and sustainable research climate.


Subject(s)
Biological Specimen Banks , Cystic Fibrosis/therapy , Organoids , Precision Medicine , Humans , Interviews as Topic
3.
Ecol Evol ; 9(10): 5542-5550, 2019 May.
Article in English | MEDLINE | ID: mdl-31160981

ABSTRACT

Niche breadth is predicted to correlate with environmental heterogeneity, such that generalists will evolve in heterogeneous environments and specialists will evolve in environments that vary less over space and time. We tested the hypothesis that lizards in a heterogeneous environment were generalists compared to lizards in a homogeneous environment. We compared niche breadths of greater short-horned lizards by quantifying resource selection in terms of two different niche axes, diet (prey items and trophic level), and microhabitat (ground cover and shade cover) between two populations occurring at different elevations. We assessed the heterogeneity of dietary and microhabitat resources within each population's environment by quantifying the availability of prey items, ground cover, and shade cover in each environment. Overall, our results demonstrate that despite differences in resource heterogeneity between elevations, resource selection did not consistently differ between populations. Moreover, environmental heterogeneity was not associated with generalization of resource use. The low-elevation site had a broader range of available prey items, yet lizards at the high-elevation site demonstrated more generalization in diet. In contrast, the high-elevation site had a broader range of available microhabitats, but the lizard populations at both sites were similarly generalized for shade cover selection and were similarly specialized for ground cover selection. Our results demonstrate that environmental heterogeneity of a particular resource does not necessarily predict the degree to which organisms specialize on that resource.

4.
Am J Phys Med Rehabil ; 88(3): 210-5, 2009 Mar.
Article in English | MEDLINE | ID: mdl-19847130

ABSTRACT

OBJECTIVE: To explore the relationship between frontal plane ankle range of motion (ROM) and frontal plane control during gait, as determined by step-width variability and step-width range, among middle-aged and older persons with peripheral neuropathy (PN). DESIGN: Observational study of 39 adults (mean age +/- standard deviation = 64.7 +/- 9.5 yrs) with PN. Demographic and clinical data, including measures of ankle ROM and PN severity, and spatiotemporal gait measures were obtained. Correlation and multivariate analyses were used to identify relationships between measures of ankle ROM and frontal plane gait variability. RESULTS: Significant negative correlations were identified between frontal plane ankle ROM (inversion + eversion), and step-width variability (r = -0.344; P = 0.032) and step-width range (r = -0.386, P = 0.015). Multivariate analyses showed that the relationship between ankle ROM and step-width variability weakened in the presence of PN severity, with ROM and PN severity both demonstrating trends toward independent associations with step-width variability (P = 0.086 and 0.083, respectively; adjusted r2 = 0.145). However, ankle ROM demonstrated a stronger association with step-width range than did PN severity (P = 0.043 and 0.098, respectively; adjusted r2 = 0.169). CONCLUSIONS: Increased frontal plane ankle ROM is associated with decreased variability in frontal plane foot placement during gait among middle-aged and older persons with PN, a population at high risk for falls.


Subject(s)
Ankle/physiology , Gait , Peripheral Nervous System Diseases/physiopathology , Range of Motion, Articular , Age Factors , Aged , Aged, 80 and over , Biomechanical Phenomena , Female , Gait Disorders, Neurologic/epidemiology , Gait Disorders, Neurologic/etiology , Humans , Male , Middle Aged , Multivariate Analysis , Regression Analysis
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