Do Groups Have Moral Standing in Unregulated mHealth Research?

Biomedical research using data from participants' mobile devices borrows heavily from the ethos of the "citizen science" movement, by delegating data collection and transmission to its volunteer subjects. This engagement gives volunteers the opportunity to feel like partners in the research and retain a reassuring sense of control over their participation. These virtues, in turn, give both grass-roots citizen science initiatives and institutionally sponsored mHealth studies appealing features to flag in recruiting participants from the public. But while grass-roots citizen science projects are often community-based, mHealth research ultimately depends on the individuals who own and use mobile devices. This inflects the ethos of mHealth research towards a celebration of individual autonomy and empowerment, at the expense of its implications for the communities or groups to which its individual participants belong. But the prospects of group harms - and benefits - from mHealth research are as vivid as they are in other forms of data-intensive "precision health" research, and will be important to consider in the design of any studies using this approach.

Examining the role of access to care: Racial/ethnic differences in receipt of resection for early-stage non-small cell lung cancer among integrated system members and non-members.

OBJECTIVES: To examine the role of uniform access to care in reducing racial/ethnic disparities in receipt of resection for early stage non-small cell lung cancer (NSCLC) by comparing integrated health system member patients to demographically similar non-member patients. MATERIALS AND METHODS: Using data from the California Cancer Registry, we conducted a retrospective cohort study of patients from four racial/ethnic groups (White, Black, Hispanic, Asian/Pacific Islander), aged 21-80, with a first primary diagnosis of stage I or II NSCLC between 2004 and 2011, in counties served by Kaiser Permanente Northern California (KPNC) at diagnosis. Our cohort included 1565 KPNC member and 4221 non-member patients. To examine the relationship between race/ethnicity and receipt of surgery stratified by KPNC membership, we used modified Poisson regression to calculate risk ratios (RR) adjusted for patient demographic and tumor characteristics. RESULTS: Black patients were least likely to receive surgery regardless of access to integrated care (64-65% in both groups). The magnitude of the black-white difference in the likelihood of surgery receipt was similar for members (RR: 0.82, 95% CI: 0.73-0.93) and non-members (RR: 0.86, 95% CI: 0.80-0.94). Among members, roughly equal proportions of Hispanic and White patients received surgery; however, among non-members, Hispanic patients were less likely to receive surgery (non-members, RR: 0.93, 95% CI: 0.86-1.00; members, RR: 0.98, 95% CI: 0.89-1.08). CONCLUSION: Disparities in surgical treatment for NSCLC were not reduced through integrated health system membership, suggesting that factors other than access to care (e.g., patient-provider communication) may underlie disparities. Future research should focus on identifying such modifiable factors.

A commitment to health equity: Reflections on why; One journey toward how.

Many health care practitioners and educators feel stymied as to how to address the pervasive and persistent problem of health care disparities between racial and ethnic groups. The closing plenary for the 37th Forum for Behavioral Science in Family Medicine held in September 2016 reminded participants of the urgent need to attend to health inequities and provided both a theoretical framework as well as some sample resources for where to begin.

Reconciling community-based Indigenous research and academic practices: Knowing principles is not always enough.

Historically, Indigenous health research in Canada has failed to engage Indigenous peoples and communities as primary stakeholders of research evidence. Increasingly, research ethics and methodologies are being positioned as tools for Indigenous self-determination. In response, mainstream institutions have developed new ethical principles for research involving Indigenous people. While these transformations are necessary steps towards re-orienting research practices, they are not prescriptive. In this paper, we make visible three dilemmas from a case study in which Indigenous health research frameworks provided limited guidance or were unclear about how to balance community priorities with Indigenous research principles. We also discuss the strategies used to resolve each of these dilemmas. We draw examples from a project that examined the lived experiences of children and youth living with FASD and their caregivers. This project was conducted in collaboration with Sheshatshiu Innu First Nation, an Indigenous community in Labrador, Canada. In doing so, we argue that knowing the key guiding principles in Indigenous health research is not always enough, and that the 'real-world' context of practices and relationships can lead to conflicts that are not easily resolved with adherence to these principles.

Know Your Monkey: Identifying Primate Conservation Challenges in an Indigenous Kichwa Community Using an Ethnoprimatological Approach.

Increasing pressure on tropical forests is continually highlighting the need to find new solutions that mitigate the impact of human populations on biodiversity. However, developing solutions that can tackle the drivers of anthropogenic pressure, or at least take them into account, hinges upon building a good understanding of the culture and perceptions of local people. This study aims to provide an overview of the ethnoprimatology of an indigenous Kichwa community in the Ecuadorian Amazon that maintains a traditional lifestyle but also has good access to markets. We examine whether primates are seen as a distinctive group and their relative importance as sources of bushmeat and as household pets. Pile-sorting exercises revealed that although locals generally group members of the order Primates together, tree-dwelling non-primates including sloths, coatis, kinkajous and tamanduas are also frequently classified as 'monkeys'. The perceived importance of primates to the forest and the community lay more in their potential as bushmeat, and only 1 respondent identified an ecological role for the group in terms of seed dispersal. Gaining a better understanding of local perceptions will allow for better-informed conservation decisions that are more aware of potential impacts and are more likely to gain community support.

Beyond Chapter 4.7.

Chapter 4.7 of the National Statement on Ethical Conduct in Human Research refers specifically to Aboriginal and Torres Strait Islander Peoples. It lays out the points at which researchers working with Aboriginal and Torres Strait Islanders must consider their approach, and the engagement with individuals, communities or groups who are involved in or affected by their research. History, of Australia and of research involving Aboriginal and Torres Strait Islander Australians, has informed this approach. The response to that history has been a rational, institutionalised, systematic demand for a different perception of what should direct research and research processes to ensure engagement with and service to the community with whom the researchers wish to do the work. This paper considers whether these principles could inform the approach to other research work.

Navigation: process of building relationships with kaumatua (Maori leaders).

In the article the authors depict relations in sociocultural navigation by Maori researchers conducting research embedded in mutual trust; rather than instrumental navigation in linear time. A longitudinal study of Maori and non Maori men and women ageing successfully was planned; this feasibility stage tested whether engaging with koroua/older Maori men and kuia/older Maori women was possible. We document the process undertaken with Nga Pae o te Maramatanga New Zealand's Indigenous Centre of Research Excellence (hosted by the University of Auckland) to involve Maori people in the research, engaging with koroua and kuia aged 75 to 79 years old, developing focus groups to discuss questions specific to te reo Maori me nga tikanga/Maori language and culture, and building research capacity in Maori tribal and primary health organisations in the Bay of Plenty. In addition, engaging with Te Taura Whiri i te Reo Maori/ Maori Language Commission to translate the questions; recruiting the RopuKaitiaki o Nga Tikanga Maori/Protectors of Principles of Conduct in Maori Research, and naming the study will be discussed. The involvement of the kaumatua/older Maori people has been fundamental in laying the foundation of the Life and Living in Advanced Age: A Cohort Study in New Zealand (LiLACS NZ), Te Puawaitanga o Nga Tapuwae Kia Ora Tonu to study a group of Maori aged 80 to 90 years old.

Grappling with groups: protecting collective interests in biomedical research.

Strategies for protecting historically disadvantaged groups have been extensively debated in the context of genetic variation research, making this a useful starting point in examining the protection of social groups from harm resulting from biomedical research. We analyze research practices developed in response to concerns about the involvement of indigenous communities in studies of genetic variation and consider their potential application in other contexts. We highlight several conceptual ambiguities and practical challenges associated with the protection of group interests and argue that protectionist strategies developed in the context of genetic research will not be easily adapted to other types of research in which social groups are placed at risk. We suggest that it is this set of conceptual and practical issues that philosophers, ethicists, and others should focus on in their efforts to protect identifiable social groups from harm resulting from biomedical research.

Research integrity and rights of indigenous peoples: appropriating Foucault's critique of knowledge/power.

In this paper I appropriate the philosophical critique of Michel Foucault as it applies to the engagement of Western science and indigenous peoples in the context of biomedical research. The science of population genetics, specifically as pursued in the Human Genome Diversity Project, is the obvious example to illustrate (a) the contraposition of modern science and 'indigenous science', (b) the tendency to depreciate and marginalize indigenous knowledge systems, and (c) the subsumption of indigenous moral preferences in the juridical armature of international human rights law. I suggest that international bioethicists may learn from Foucault's critique, specifically of the need for vigilance about the knowledge/power relation expressed by the contraposition of modern science and 'indigeneity'.