Concept: Civil and political rights
Donald Trump’s presidency heralds public health retreat in the short term. Yet the surging opposition to his regime-redolent of the civil rights and anti-Vietnam War mobilizations of the 1950s and 1960s-could portend better things ahead. (Am J Public Health. Published online ahead of print March 21, 2017: e1-e3. doi:10.2105/AJPH.2017.303729).
Sharing research data by depositing it in connection with a published article or otherwise making data publicly available sometimes raises intellectual property questions in the minds of depositing researchers, their employers, their funders, and other researchers who seek to reuse research data. In this context or in the drafting of data management plans, common questions are (1) what are the legal rights in data; (2) who has these rights; and (3) how does one with these rights use them to share data in a way that permits or encourages productive downstream uses? Leaving to the side privacy and national security laws that regulate sharing certain types of data, this Perspective explains how to work through the general intellectual property and contractual issues for all research data.
The previous article in this law column considered a patient’s right to give a real consent before a district nurse could proceed with care and treatment. This article considers the district nurse’s rights and responsibilities when considering withdrawing or withholding clinically-assisted nutrition and hydration. It focuses on recent cases in the Court of Protection, M v A Hospital  , and High Court, NHS Trust v Mr Y & Mrs Y  , and on the need to bring such cases to court before treatment is withdrawn.
This paper discusses the nature of genomic information, and the moral arguments in support of an individual’s right to access it. It analyses the legal avenues an individual might take to access their sequence information. The authors describe the policy implications in this area and conclude that, for now, the law appears to strike an appropriate balance, but new policy will need to be developed to address this issue.
Existing literature on numeracy suggests that people are likely to perceive out-groups as larger if the group is perceived as threating. However, some studies also suggest that numeracy is a function of wishful thinking or even a lack of political knowledge. We engage the literature on numeracy of the gay and lesbian population by employing data from 1977 and 2013 surveys of American adults. We examine the factors that are associated with estimating the gay population. Next we explore how innumeracy may shape attitudes about homosexuality and gay rights. Our findings suggest that estimates of the gay population are partly a function of knowledge, and perhaps wishful thinking, but not threat. However, our analysis also reveals that higher estimates of the gay population are associated less support for gay civil rights in the current era, and were not a factor in the past.
More than fifty years after the passage of the Civil Rights Act of 1964, health care for racial and ethnic minorities remains in many ways separate and unequal in the United States. Moreover, efforts to improve minority health care face challenges that differ from those confronted during de jure segregation. We review these challenges and examine whether stronger enforcement of existing civil rights legislation could help overcome them. We conclude that stronger enforcement of existing laws-for example, through executive orders to strengthen enforcement of the laws and congressional action to allow private individuals to bring lawsuits against providers who might have engaged in discrimination-would improve minority health care, but this approach is limited in what it can achieve. Complementary approaches outside the legal arena, such as quality improvement efforts and direct transfers of money to minority-serving providers-those seeing a disproportionate number of minority patients relative to their share of the population-might prove to be more effective.
Discrimination causes health inequities for stigmatized groups. Lesbian, gay, bisexual, transgender, and queer (LGBTQ) individuals, in particular, are at significantly increased risk for disparate health outcomes when they reside in states that fail to extend equal protections to them or that actively deprive equal rights to them. Several states and the federal government have proposed or enacted laws that permit residents to discriminate against LGBTQ individuals. One such law, Arkansas’s Intrastate Commerce Improvement Act of 2015, preempts or prohibits local governments from enacting civil rights protections for LGBTQ individuals that are also lacking at the state level. State laws such as Arkansas’s undermine local control, damage the economy, and create injustices that harm LGBTQ people. I set forth 2 constitutional arguments to challenge such laws, and I provide information to help advocates support evidence-based policymaking and prevent the passage of similar laws in their states. (Am J Public Health. Published online ahead of print November 21, 2017: e1-e6. doi:10.2105/AJPH.2017.304116).
Largely driven by the financial incentives of the HITECH Act’s Meaningful Use program as part of federal US health care reform, access to portal Web sites has rapidly expanded, allowing many patients to view their medical record information online. Despite this expansion, there is little attention paid to the accessibility of portals for more vulnerable patient populations-especially patients with limited health literacy or limited English proficiency, and individuals with disabilities. We argue that there are potential legal mandates for improving portal accessibility (e.g., the Civil Rights and the Rehabilitation Acts), as well as ethical considerations to prevent the exacerbation of existing health and health care disparities. To address these legal, practical, and ethical considerations, we present standards and broad recommendations that could greatly improve the reach and impact of portal Web sites. (Am J Public Health. Published online ahead of print August 17, 2017: e1-e4. doi:10.2105/AJPH.2017.303933).
Different discourses that co-exist within the world of patient and public involvement in health and social care mirror a tangle of historical, social, political and theoretical roots. These range from the radical activism, born of civil rights movements, to a more passive model in which patients are the recipients of information. This paper explores the concept of ‘representation’ and the ways the concept is used by people serving as ‘patient’ or ‘lay’ representatives in a range of roles within research projects, funding bodies and academic institutions. We address the issue of why the representativeness of those involved is contestable. Drawing on qualitative research and engaged practice as well as on literature from social and political sciences we question how people conceptualise their own and their fellows' acts of representation. In doing this we identify nine different conceptualisations of what it is to represent and use these to explore how judgements are made about what can count as legitimate forms of representation.
Hijra, the iconic figure of South Asian gender and sexual difference, comprise a publicly institutionalised subculture of male-bodied feminine-identified people. Although they have existed as a culturally recognised third gender for a very long time, it is only recently that hijra have been legally recognised as a third gender in several South Asian countries. This paper focuses on the transformation of this long-running cultural category of third gender into a legal category of third gender in Bangladesh, showing that the process of legal recognition has necessitated a simultaneous mobilisation of a discourse of disability in the constitution of hijra as citizens worthy of rights. While the international community views the recognition of a third gender as a progressive socio-legal advance in the obtaining of sexual rights in a Muslim majority Bangladesh, locally, hijra are understood as a special group of people born with ‘missing’ or ambiguous genitals delinked from desire. Furthermore, what was previously a trope of disfigurement based on putative genital status has now been transformed into a discourse of disability, a corollary to which several interest groups, namely the civil society, the state, international community and hijra themselves, have all been party.