Informed, uninformed and participative consent in social media research

The use of online data is becoming increasingly essential for the generation of insight in today’s research environment. This reflects the much wider range of data available online and the key role that social media now plays in interpersonal communication. However, the process of gaining permission to use social media data for research purposes creates a number of significant issues when considering compatibility with professional ethics guidelines. This paper critically explores the application of existing informed consent policies to social media research and compares with the form of consent gained by the social networks themselves, which we label ‘uninformed consent’. We argue that, as currently constructed, informed consent carries assumptions about the nature of privacy that are not consistent with the way that consumers behave in an online environment. On the other hand, uninformed consent relies on asymmetric relationships that are unlikely to succeed in an environment based on co-creation of value. The paper highlights the ethical ambiguity created by current approaches for gaining customer consent, and proposes a new conceptual framework based on participative consent that allows for greater alignment between consumer privacy and ethical concerns.

'They did not have a word': the parental quest to locate a 'true sex' for their intersex children

Given the paucity of research in this area, the primary aim of this study was to explore how parents of infants with unclear sex at birth made sense of 'intersex'. Qualitative methods were, used (semi-structured interviews, interpretative phenomenological analysis) with 10 parents to generate pertinent themes and provide ideas for further research. Our analysis highlights the fundamental shock engendered by the uncertain sex status of children, and documents parental struggles to negotiate a coherent sex identity for their children. Findings are discussed in light of the rigid two-sex system which pervades medicine and everyday life, and we argue that greater understanding of the complexity of sex and gender is required in order to facilitate better service provision and, ultimately, greater informed consent and parental participation regarding decisions about their children's status.

Palm oil, land rights and ecosystem services in Gbarpolu County, Liberia

As part of the rebuilding efforts following the long civil war, the Liberian government has renegotiated long-term contracts with international investors to exploit natural resources. Substantial areas of land have been handed out in large-scale concessions across Liberia during the last five years. While this may promote economic growth at the national level, such concessions are likely to have major environmental, social and economic impacts on local communities, who may not have been consulted on the proposed developments. This report examines the potential socio-economic and environmental impacts of a proposed large-scale oil palm concession in Bopolu District, Gbarpolu County in Liberia. The research provided an in-depth mapping of current resource use, livelihoods and ecosystems services, in addition to analysis of community consultation and perceptions of the potential impacts of the proposed development. This case study of a palm oil concession in Liberia highlights wider policy considerations regarding large-scale land acquisitions in the global South: • Formal mechanisms may be needed to ensure the process of Free, Prior, Informed Consent takes place effectively with affected communities and community land rights are safeguarded. • Rigorous Environmental and Social Impact Assessments need to be conducted before operations start. Accurate mapping of customary land rights, community resources and cultural sites, livelihoods, land use, biodiversity and ecosystems services is a critical tool in this process. • Greater clarity and awareness-raising of land tenure laws and policies is needed at all levels. Good governance and capacity-building of key institutions would help to ensure effective implementation of relevant laws and policies. • Efforts are needed to improve basic services and infrastructure in rural communities and invest in food crop cultivation in order to enhance food security and poverty alleviation. Increasing access to inputs, equipment, training and advice is especially important if male and female farmers are no longer able to practice shifting cultivation due to the reduction/ loss of customary land and the need to farm more intensively on smaller areas of land.

Factors contributing to fecal incontinence in older people and outcome of routine management in home, hospital and nursing home settings

Objective: Fecal loading, cognitive impairment, loose stools, functional disability, comorbidity and anorectal incontinence are recognized as factors contributing to loss of fecal continence in older adults. The objective of this project was to assess the relative distribution of these factors in a variety of settings along with the outcome of usual management. Methods: One hundred and twenty adults aged 65 years and over with fecal incontinence recruited by convenience sampling from four different settings were studied. They were either living at home or in a nursing home or receiving care on an acute or rehabilitation elderly care ward. A structured questionnaire was used to elicit which factors associated with fecal incontinence were present from subjects who had given written informed consent or for whom assent for inclusion in the study had been obtained. Results: Fecal loading (Homes 6 [20%]; Acute care wards 17 [57%]; Rehabilitation wards 19 [63%]; Nursing homes 21 [70%]) and functional disability (Homes 5 [17%]; Acute care wards 25 [83%]; Rehabilitation wards 25 [83%]; Nursing homes 20 [67%]) were significantly more prevalent in the hospital and nursing home settings than in those living at home (P < 0.01). Loose stools were more prevalent in the hospital setting than in the other settings (Homes 11 [37%]; Acute care wards 20 [67%]; Rehabilitation wards 17 [57%]; Nursing homes 6 [20%]) (P < 0.01). Cognitive impairment was significantly more common in the nursing home than in the other settings (Nursing homes 26 [87%], Homes 5 [17%], Acute care wards 13 [43%], Rehabilitation wards 14 [47%]) (P < 0.01). Loose stools were the most prevalent factor present at baseline in 13 of the 19 (68%) subjects whose fecal incontinence had resolved at 3 months. Conclusion: The distribution of the factors contributing to fecal incontinence in older people living at home differs from those cared for in nursing home and hospital wards settings. These differences need to be borne in mind when assessing people in different settings. Management appears to result in a cure for those who are not significantly disabled with loose stools as a cause for their fecal incontinence, but this would need to be confirmed by further research.

An ethnomedicinal survey of a Tashelhit-speaking community in the High Atlas, Morocco

Traditional knowledge about medicinal plants from a poorly studied region, the High Atlas in Morocco, is reported here for the first time; this permits consideration of efficacy and safety of current practices whilst highlighting species previously not known to have traditional medicinal use. Our study aims to document local medicinal plant knowledge among Tashelhit speaking communities through ethnobotanical survey, identifying preferred species and new medicinal plant citations and illuminating the relationship between emic and etic ailment classifications. Ethnobotanical data were collected using standard methods and with prior informed consent obtained before all interactions, data were characterized using descriptive indices and medicinal plants and healing strategies relevant to local livelihoods were identified. 151 vernacular names corresponding to 159 botanical species were found to be used to treat 36 folk ailments grouped in 14 biomedical use categories. Thirty-five (22%) are new medicinal plant records in Morocco, and 26 described as used for the first time anywhere. Fidelity levels (FL) revealed low specificity in plant use, particularly for the most commonly reported plants. Most plants are used in mixtures. Plant use is driven by local concepts of disease, including “hot” and “cold” classification and beliefs in supernatural forces. Local medicinal plant knowledge is rich in the High Atlas, where local populations still rely on medicinal plants for healthcare. We found experimental evidence of safe and effective use of medicinal plants in the High Atlas; but we highlight the use of eight poisonous species.

The possibility of consent

Worries about the possibility of consent recall a more familiar problem about promising raised by Hume. To see the parallel here we must distinguish the power of consent from the normative significance of choice. I'll argue that we have normative interests, interests in being able to control the rights and obligations of ourselves and those around us, interests distinct from our interest in controlling the non-normative situation. Choice gets its normative significance from our non-normative control interests. By contrast, the possibility of consent depends on a species of normative interest that I'll call a permissive interest, an interest in its being the case that certain acts wrong us unless we declare otherwise. In the final section, I'll show how our permissive interests underwrite the possibility of consent.

When consent doesn't work: a rights-based case for limits to consent’s capacity to legitimise

Consent's capacity to legitimise actions and claims is limited by conditions such as coercion, which render consent ineffective. A better understanding of the limits to consent's capacity to legitimise can shed light on a variety of applied debates, in political philosophy, bioethics, economics and law. I show that traditional paternalist explanations for limits to consent's capacity to legitimise cannot explain the central intuition that consent is often rendered ineffective when brought about by a rights violation or threatened rights violation. I argue that this intuition is an expression of the same principles of corrective justice that underlie norms of compensation and rectification. I show how these principles can explain and clarify core intuitions about conditions which render consent ineffective, including those concerned with the consenting agent's option set, his mental competence, and available information.

Online data processing consent under EU law: a theoretical framework and empirical evidence from the UK

This article analyses the results of an empirical study on the 200 most popular UK-based websites in various sectors of e-commerce services. The study provides empirical evidence on unlawful processing of personal data. It comprises a survey on the methods used to seek and obtain consent to process personal data for direct marketing and advertisement, and a test on the frequency of unsolicited commercial emails (UCE) received by customers as a consequence of their registration and submission of personal information to a website. Part One of the article presents a conceptual and normative account of data protection, with a discussion of the ethical values on which EU data protection law is grounded and an outline of the elements that must be in place to seek and obtain valid consent to process personal data. Part Two discusses the outcomes of the empirical study, which unveils a significant departure between EU legal theory and practice in data protection. Although a wide majority of the websites in the sample (69%) has in place a system to ask separate consent for engaging in marketing activities, it is only 16.2% of them that obtain a consent which is valid under the standards set by EU law. The test with UCE shows that only one out of three websites (30.5%) respects the will of the data subject not to receive commercial communications. It also shows that, when submitting personal data in online transactions, there is a high probability (50%) of incurring in a website that will ignore the refusal of consent and will send UCE. The article concludes that there is severe lack of compliance of UK online service providers with essential requirements of data protection law. In this respect, it suggests that there is inappropriate standard of implementation, information and supervision by the UK authorities, especially in light of the clarifications provided at EU level.