The relationship between CFH and ARMS2 genotypes and neuroretinal function in persons without age-related macular degeneration

Purpose: To determine whether neuroretinal function differs in healthy persons with and without common risk gene variants for age- related macular degeneration (AMD) and no ophthalmoscopic signs of AMD, and to compare those findings in persons with manifest early AMD. Methods and Participants: Neuroretinal function was assessed with the multifocal electroretinogram (mfERG) (VERIS, Redwood City, CA,) in 32 participants (22 healthy persons with no clinical signs of AMD and 10 early AMD patients). The 22 healthy participants with no AMD were risk genotypes for either the CFH (rs380390) and/or ARMS2 (rs10490920). We used a slow flash mfERG paradigm (3 inserted frames) and a 103 hexagon stimulus array. Recordings were made with DTL electrodes; fixation and eye movements were monitored online. Trough N1 to peak P1 (N1P1) response densities and P1-implicit times (IT) were analysed in 5 concentric rings. Results: N1P1 response densities (mean ± SD) for concentric rings 1-3 were on average significantly higher in at-risk genotypes (ring 1: 17.97 nV/deg2 ± 1.9, ring 2: 11.7 nV/deg2 ±1.3, ring 3: 8.7 nV/deg2 ± 0.7) compared to those without risk (ring 1: 13.7 nV/deg2 ± 1.9, ring 2: 9.2 nV/deg2 ±0.8, ring 3: 7.3 nV/deg2 ± 1.1) and compared to persons with early AMD (ring 1: 15.3 nV/deg2 ± 4.8, ring 2: 9.1 nV/deg2 ±2.3, ring 3 nV/deg2: 7.3± 1.3) (p<0.5). The group implicit times, P1-ITs for ring 1 were on average delayed in the early AMD patients (36.4 ms ± 1.0) compared to healthy participants with (35.1 ms ± 1.1) or without risk genotypes (34.8 ms ±1.3), although these differences were not significant. Conclusion: Neuroretinal function in persons with normal fundi can be differentiated into subgroups based on their genetics. Increased neuroretinal activity in persons who carry AMD risk genotypes may be due to genetically determined subclinical inflammatory and/or histological changes in the retina. Assessment of neuroretinal function in healthy persons genetically susceptible to AMD may be a useful early biomarker before there is clinical manifestation of AMD.

(Re)-regulating care : employing foreign carers for older persons in Taiwan

The purpose of this research was to develop a theoretical understanding of the social phenomenon of the employment of foreign carers for older Taiwanese in households. Foreign carers were introduced into Taiwan in 1992 to address the care needs of the older population. By 2012, over 200,000 foreign caregivers from Indonesia, Philippines, and Vietnam were providing care in households in Taiwan. There has been little research on the interactions between and experiences of family employers, foreign carers and older persons receiving care. The theoretical framework brought together symbolic interactionist concepts and the social constructionism of Berger and Luckmann. Data collection and analysis were informed by Charmaz‘s formulation of grounded theory. Two focus groups and 54 in-depth interviews with a total of 57 Indonesian and Vietnamese foreign carers, Taiwanese family employers and older persons receiving care were undertaken. The analytical findings of the research reflect the ways in which the foreign carer, older persons receiving care and family employer participants were socially situated within the research context and how their respective social realities were shaped differently by changing social structures and cultural values within a globalising context. (Re)-regulating care was generated as the core category, forming a coherent and overarching framework that integrated the three analytical dimensions of the reality of the social change, resituating roles and struggling for control. The reality of social change refers to the employment of foreign carers as a manifestation of the reshaping of the social worlds of the three groups of participants. Resituating roles reflects the processes that underpin the hierarchical positioning of participants, the resultant asymmetrical power relations and associated interactions. Struggling for control, depicts how each group employed strategies to create space and identities that would sustain a sense of self and autonomy. In the current situation of economic and social change in Taiwan the three participant groups shared a desire for control. The autonomy of the women employers was negotiated through employment of foreign carers; for the foreign carers, a pragmatic decision to work abroad became a means for personal empowerment; and the older persons receiving care regained some authority through relationships with carers.

Confronting the conspiracy of silence and denial of difference for late discovery adoptive persons and donor conceived people

This article outlines the impact that a conspiracy of silence and denial of difference has had on some adopted and donor conceived persons who have been lied to or misled about their origins. Factors discussed include deceit - expressed as a central secret which undermines the fabric of a family and through distortion mystifies communication processes; the shock of discovery - often revealed accidentally and the associated sense of betrayal when this occurs; and a series of losses, for example, kinship, medical history, culture and agency which result in having to rebuild personal identity. By providing those affected with a voice, validation and vindication healing can begin. Any feelings of disregard, of betrayal of trust, of anger, frustration, sorrow or loss, need to be regarded as real, expected, and above all, a valid reaction to what has occurred. The author is a 'late discoverer' of her adoption and draws on the information from her doctoral research on the same topic which was completed in 2012.

Copyright protections and disability rights : turning the page to a new international paradigm

This paper argues that governments around the world need to take immediate coordinated action to reverse the 'book famine.' There are over 129 million book titles in the world, but persons with print disabilities can obtain less than 7% of these titles in formats that they can read. The situation is most acute in developing countries, where less than 1% of books are accessible. Two recent international developments – the United Nations Convention on the Rights of Persons with Disabilities (‘CRPD’) and the new Marrakesh Treaty to Facilitate Access to Published Works for Persons who are Blind, Visually Impaired, or otherwise Print Disabled (somewhat ironically nicknamed the ‘VIP Treaty’) – suggest that nation states are increasingly willing to take action to reverse the book famine. The Marrakesh Treaty promises to level out some of the disparity of access between people in developed and developing nations and remove the need for each jurisdiction to digitise a separate copy of each book. This is a remarkable advance, and suggests the beginnings of a possible paradigm shift in global copyright politicsmade all the more remarkable in the face of heated opposition by global copyright industry representatives. Now that the Marrakesh Treaty has been concluded, however, we argue that a substantial exercise of global political will is required to (a) invest the funds required to digitise existing books; and (b) avert any further harm by ensuring that books published in the future are made accessible upon their release.

Characteristics of on-road driving performance of persons with central vision loss who use bioptic telescopes

Purpose. To compare the on-road driving performance of visually impaired drivers using bioptic telescopes with age-matched controls. Methods. Participants included 23 persons (mean age = 33 ± 12 years) with visual acuity of 20/63 to 20/200 who were legally licensed to drive through a state bioptic driving program, and 23 visually normal age-matched controls (mean age = 33 ± 12 years). On-road driving was assessed in an instrumented dual-brake vehicle along 14.6 miles of city, suburban, and controlled-access highways. Two backseat evaluators independently rated driving performance using a standardized scoring system. Vehicle control was assessed through vehicle instrumentation and video recordings used to evaluate head movements, lane-keeping, pedestrian detection, and frequency of bioptic telescope use. Results. Ninety-six percent (22/23) of bioptic drivers and 100% (23/23) of controls were rated as safe to drive by the evaluators. There were no group differences for pedestrian detection, or ratings for scanning, speed, gap judgments, braking, indicator use, or obeying signs/signals. Bioptic drivers received worse ratings than controls for lane position and steering steadiness and had lower rates of correct sign and traffic signal recognition. Bioptic drivers made significantly more right head movements, drove more often over the right-hand lane marking, and exhibited more sudden braking than controls. Conclusions. Drivers with central vision loss who are licensed to drive through a bioptic driving program can display proficient on-road driving skills. This raises questions regarding the validity of denying such drivers a license without the opportunity to train with a bioptic telescope and undergo on-road evaluation.

The international regulation of persons displaced by climate change

It is certain that there will be changes in environmental conditions across the globe as a result of climate change. Such changes will require the building of biological, human and infrastructure resilience. In some instances, the building of such resilience will be insufficient to deal with extreme changes in environmental conditions and legal frameworks will be required to provide recognition and support for people relocating as a result of environmental change. International legal frameworks do not currently recognise or assist people displaced as a result of environmental factors. The objective of this chapter is to examine the areas of international law relevant to displacement arising from environmental factors, consider some of the proposed climate displacement instruments and suggest the most suitable international institution to host a program addressing climate displacement. In order to determine the most appropriate institution to address and regulate climate displacement, it is imperative to consider issues of governance. This paper seeks to examine this issue and determine whether it is preferable to place climate displacement programs into existing international legal frameworks, or whether it is necessary to regulate this area in an entirely new institution specifically designed to deal with the complex and cross-cutting issues surrounding the topic...

Shifting Powers : Protection of Refugees and Displaced Persons in the Asia Pacific Region

The United Nations High Commissioner for Refugees' (UNHCR) 2011 statistics on refugee populations residing by region are a stark reminder of the challenge facing states and civil society in the Asia Pacific. In 2011, Africa hosted 2,149,000 refugees; the Americas, Europe, and Middle East and North Africa hosted 513 ,500, 1,605,500 and 1,889,900 respectively, while the Asia Pacific hosted a staggering 3,793,900. The fact that 35 per cent of the world's refugees reside in the Asia Pacific, coupled with the fact that 84 per cent of refugees displaced in Asia remain in the region,raises the questions why so few countries in the region are signatories to the Convention relating to the Status of Refugees ('Refugee Convention') or cognate rights instruments and why no formally binding regional agreement exists for the equitable sharing of responsibilities for refugees...

The relationship between BCOM1 gene variants and macular pigment optical density in persons with and without age-related macular degeneration

Background: Recent evidence indicates that gene variants related to carotenoid metabolism play a role in the uptake of macular pigments lutein (L) and zeaxanthine (Z). Moreover, these pigments are proposed to reduce the risk for advanced age-related macular degeneration (AMD). This study provides the initial examination of the relationship between the gene variants related to carotenoid metabolism, macular pigment optical density (MPOD) and their combined expression in healthy humans and patients with AMD. Participants and Methods: Forty-four participants were enrolled from a general population and a private practice including 20 healthy participants and 24 patients with advanced (neovascular) AMD. Participants were genotyped for the three single nucleotide polymorphisms (SNPs) upstream from BCMO1, rs11645428, rs6420424 and rs6564851 that have been shown to either up or down regulate beta-carotene conversion efficiency in the plasma. MPOD was determined by heterochromatic flicker photometry. Results: Healthy participants with the rs11645428 GG genotype, rs6420424 AA genotype and rs6564851 GG genotype all had on average significantly lower MPOD compared to those with the other genotypes (p < 0.01 for all three comparisons). When combining BCMO1 genotypes reported to have “high” (rs11645428 AA/rs6420424 GG/rs6564851 TT) and “low” (rs11645428 GG/rs6420424 AA/rs6564851 GG) beta-carotene conversion efficiency, we demonstrate clear differences in MPOD values (p<0.01). In patients with AMD there were no significant differences in MPOD for any of the three BCMO1 gene variants. Conclusion: In healthy participants MPOD levels can be related to high and low beta-carotene conversion BCMO1 genotypes. Such relationships were not found in patients with advanced neovascular AMD, indicative of additional processes influencing carotenoid uptake, possibly related to other AMD susceptibility genes. Our findings indicate that specific BCMO1 SNPs should be determined when assessing the effects of carotenoid supplementation on macular pigment and that their expression may be influenced by retinal disease.

Is there an international duty to protect persons in the event of an epidemic?

In 2006, the International Law Commission began a study into the role of states and international organizations in protecting persons in the event of a disaster. Special Rapporteur Mr. Eduardo Valencia-Ospina was appointed to head the study, and in 2011 the findings of the study will be presented to the United Nations General Assembly. Of interest to this paper has been the inclusion of “epidemics” under the natural disaster category in all of the reports detailing the Commission’s program of work on the protection of persons. This paper seeks to examine the legal and political ramifications involved in including “epidemic” into the concept of protection by exploring where sovereign responsibility for epidemic control begins and ends, particularly in light of the revisions to the International Health Regulations by the World Health Assembly in 2005. The paper will first analyze the findings already presented by the Special Rapporteur, examining the existing “responsibilities” of both states and international organizations. Then, the paper will consider to what extent the concept of protection entails the duty to assist individuals when an affected state proves unwilling or unable to assist their own population in the event of a disease outbreak. In an attempt to answer this question, the third part of the paper will examine the recent cholera outbreak in Zimbabwe.

Paratransit demand of disabled people

This paper estimates the demand for transportation systems that are used primarily by disabled individuals. These systems are known as paratransit systems and have experienced large increases in number and average size over the past 15 years. We first use a national database and standard time series techniques to model aggregate demand. We then use a unique data set of administrative records from a paratransit system in central Virginia to estimate standard and nonstandard count models of individual demand. We conclude that most of the demand growth is from new passengers, but that predicting the growth of new passengers is very difficult. Our results also highlight the importance of incorporating autocorrelation and possible sample attrition into standard count models.

A disaggregate discrete choice model of transportation demand by elderly and disabled people in rural Virginia

This paper uses a correlated multinomial logit model and a Poisson regression model to measure the factors affecting demand for different types of transportation by elderly and disabled people in rural Virginia. The major results are: (a) A paratransit system providing door-to-door service is highly valued by transportation-handicapped people; (b) Taxis are probably a potential but inferior alternative even when subsidized; (c) Buses are a poor alternative, especially in rural areas where distances to bus stops may be long; (d) Making buses handicap-accessible would have a statistically significant but small effect on mode choice; (e) Demand is price inelastic; and (f) The total number of trips taken is insensitive to mode availability and characteristics. These results suggest that transportation-handicapped people take a limited number of trips. Those they do take are in some sense necessary (given the low elasticity with respect to mode price or availability). People will substitute away from relying upon others when appropriate transportation is available, at least to some degree. But such transportation needs to be flexible enough to meet the needs of the people involved.

Viability of Pseudomonas aeruginosa in cough aerosols generated by persons with cystic fibrosis

Background Person-to-person transmission of respiratory pathogens, including Pseudomonas aeruginosa, is a challenge facing many cystic fibrosis (CF) centres. Viable P aeruginosa are contained in aerosols produced during coughing, raising the possibility of airborne transmission. Methods Using purpose-built equipment, we measured viable P aeruginosa in cough aerosols at 1, 2 and 4 m from the subject (distance) and after allowing aerosols to age for 5, 15 and 45 min in a slowly rotating drum to minimise gravitational settling and inertial impaction (duration). Aerosol particles were captured and sized employing an Anderson Impactor and cultured using conventional microbiology. Sputum was also cultured and lung function and respiratory muscle strength measured. Results Nineteen patients with CF, mean age 25.8 (SD 9.2) years, chronically infected with P aeruginosa, and 10 healthy controls, 26.5 (8.7) years, participated. Viable P aeruginosa were detected in cough aerosols from all patients with CF, but not from controls; travelling 4 m in 17/18 (94%) and persisting for 45 min in 14/18 (78%) of the CF group. Marked inter-subject heterogeneity of P aeruginosa aerosol colony counts was seen and correlated strongly (r=0.73–0.90) with sputum bacterial loads. Modelling decay of viable P aeruginosa in a clinic room suggested that at the recommended ventilation rate of two air changes per hour almost 50 min were required for 90% to be removed after an infected patient left the room. Conclusions Viable P aeruginosa in cough aerosols travel further and last longer than recognised previously, providing additional evidence of airborne transmission between patients with CF.

Crafting and retelling everyday lives : disabled people's contribution to bioethical concerns

This commentary draws out themes from the narrative symposium on “living with the label “disability”” from the perspective of auto/biography and critical disability studies in the humanities. It notes the disconnect between the experiences discussed in the stories and the preoccupations of bioethicists. Referencing Rosemarie Garland-Thompson’s recent work, it suggests that life stories by people usually described as “disabled” offer narrative, epistemic and ethical resources for bioethics. The commentary suggests that the symposium offers valuable conceptual tools and critiques of taken-for-granted terms like “dependency”. It notes that these narrators do not un–problematically embrace the term “disability”, but emphasize the need to redefine, strategically deploy or reject this term. Some accounts are explicitly critical of medical practitioners while others redefine health and wellbeing, emphasizing the need for reciprocity and respect for the knowledge of people with disability, including knowledge from their experience of “the variant body” (Leach Scully, 2008).