Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data.

Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.

Genomic Research Through an Indigenous Lens: Understanding the Expectations.

Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples' engagement with genomicresearch was hampered by a lack of standardized guidelines and institutional partnerships, resulting in group harms. This article provides a comparative analysis of research guidelines from Canada, New Zealand, Australia, and the United States that pertain to Indigenous peoples. The goals of the analysis are to identify areas that need attention, support Indigenous-led governance, and promote the development of a model research policy framework for genomic research and health care that has international relevance for Indigenous peoples.

Expanded Ethical Principles for Research Partnership and Transdisciplinary Natural Resource Management Science.

Natural resource researchers have long recognized the value of working closely with the managers and communities who depend on, steward, and impact ecosystems. These partnerships take various forms, including co-production and transdisciplinary research approaches, which integrate multiple knowledges in the design and implementation of research objectives, questions, methods, and desired outputs or outcomes. These collaborations raise important methodological and ethical challenges, because partnering with non-scientists can have real-world risks for people and ecosystems. The social sciences and biomedical research studies offer a suite of conceptual tools that enhance the quality, ethical outcomes, and effectiveness of research partnerships. For example, the ethical guidelines and regulations for human subjects research, following the Belmont Principles, help prevent harm and promote respectful treatment of research participants. However, science-management partnerships require an expanded set of ethical concepts to better capture the challenges of working with individuals, communities, organizations, and their associated ecosystems, as partners, rather than research subjects. We draw from our experiences in collaborative teams, and build upon the existing work of natural resources, environmental health, conservation and ecology, social science, and humanities scholars, to develop an expanded framework for ethical research partnership. This includes four principles: (1) appropriate representation, (2) self-determination, (3) reciprocity, and (4) deference, and two cross-cutting themes: (1) applications to humans and non-human actors, and (2) acquiring appropriate research skills. This framework is meant to stimulate important conversations about expanding ethics training and skills for researchers in all career-stages to improve partnerships and transdisciplinary natural resources research.

Reciprocal space temperature-dependent phonons method fromab-initiodynamics.

We present a robust reciprocal-space implementation of the temperature-dependent effective potential method, our implementation can scale easily to large cell and long sampling time. It is interoperable with standardab-initiomolecular dynamics and with Langevin dynamics. We prove that both sampling methods can be efficient and accurate if a thermostat is used to control temperature and dynamics parameters are used to optimize the sampling efficiency. By way of example, we apply it to study anharmonic phonon renormalization in weakly and strongly anharmonic materials, reproducing the temperature effect on phonon frequencies, crossing of phase transition, and stabilization of high-temperature phases.

Indigenous Peoples and research: self-determination in research governance.

Indigenous Peoples are reimagining their relationship with research and researchers through greater self-determination and involvement in research governance. The emerging discourse around Indigenous Data Sovereignty has provoked discussions about decolonizing data practices and highlighted the importance of Indigenous Data Governance to support Indigenous decision-making and control of data. Given that much data are generated from research, Indigenous research governance and Indigenous Data Governance overlap. In this paper, we broaden the concept of Indigenous Data Sovereignty by using the CARE Principles for Indigenous Data Governance to discuss how research legislation and policy adopted by Indigenous Peoples in the US set expectations around recognizing sovereign relationships, acknowledging rights and interests in data, and enabling Indigenous Peoples' participation in research governance.

Global impacts of extractive and industrial development projects on Indigenous Peoples' lifeways, lands, and rights.

To what extent do extractive and industrial development pressures affect Indigenous Peoples' lifeways, lands, and rights globally? We analyze 3081 environmental conflicts over development projects to quantify Indigenous Peoples' exposure to 11 reported social-environmental impacts jeopardizing the United Nations Declaration on the Rights of Indigenous Peoples. Indigenous Peoples are affected in at least 34% of all documented environmental conflicts worldwide. More than three-fourths of these conflicts are caused by mining, fossil fuels, dam projects, and the agriculture, forestry, fisheries, and livestock (AFFL) sector. Landscape loss (56% of cases), livelihood loss (52%), and land dispossession (50%) are reported to occur globally most often and are significantly more frequent in the AFFL sector. The resulting burdens jeopardize Indigenous rights and impede the realization of global environmental justice.

Indigenous Peoples' Rights in Data: a contribution toward Indigenous Research Sovereignty.

Indigenous Peoples' right to sovereignty forms the foundation for advocacy and actions toward greater Indigenous self-determination and control across a range of domains that impact Indigenous Peoples' communities and cultures. Declarations for sovereignty are rising throughout Indigenous communities and across diverse fields, including Network Sovereignty, Food Sovereignty, Energy Sovereignty, and Data Sovereignty. Indigenous Research Sovereignty draws in the sovereignty discourse of these initiatives to consider their applications to the broader research ecosystem. Our exploration of Indigenous Research Sovereignty, or Indigenous self-determination in the context of research activities, has been focused on the relationship between Indigenous Data Sovereignty and efforts to describe Indigenous Peoples' Rights in data.

Extending the CARE Principles from tribal research policies to benefit sharing in genomic research.

Indigenous Peoples have historically been targets of extractive research that has led to little to no benefit. In genomics, such research not only exposes communities to harms and risks of misuse, but also deprives such communities of potential benefits. Tribes in the US have been exercising their sovereignty to limit this extractive practice by adopting laws and policies to govern research on their territories and with their citizens. Federally and state recognized tribes are in the strongest position to assert research oversight. Other tribes lack the same authority, given that federal and state governments do not recognize their rights to regulate research, resulting in varying levels of oversight by tribes. These governance measures establish collective protections absent from the US federal government's research oversight infrastructure, while setting expectations regarding benefits to tribes as political collectives. Using a legal epidemiology approach, the paper discusses findings from a review of Tribal research legislation, policy, and administrative materials from 26 tribes in the US. The discussion specifies issues viewed by tribes as facilitators and barriers to securing benefits from research for their nations and members/citizens, and describes preemptive and mitigating strategies pursued by tribes in response. These strategies are set within the framing of the CARE Principles for Indigenous Data Governance (Collective Benefit, Authority to Control, Responsibility, Ethics), a set of standards developed to ensure that decisions made about data pertaining to Indigenous communities at the individual and tribal levels are responsive to their values and collective interests. Our findings illustrate gaps to address for benefit sharing and a need to strengthen Responsibility and Ethics in tribal research governance.

Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes.

Biomedical data are now organized in large-scale databases allowing researchers worldwide to access and utilize the data for new projects. As new technologies generate even larger amounts of data, data governance and data management are becoming pressing challenges. The FAIR principles (Findable, Accessible, Interoperable, and Reusable) were developed to facilitate data sharing. However, the Indigenous Data Sovereignty movement advocates for greater Indigenous control and oversight in order to share data on Indigenous Peoples' terms. This is especially true in the context of genetic research where Indigenous Peoples historically have been unethically exploited in the name of science. This article outlines the relationship between sovereignty and ethics in the context of data to describe the collective rights that Indigenous Peoples assert to increase control over their biomedical data. Then drawing on the CARE Principles for Indigenous Data Governance (Collective benefit, Authority to control, Responsibility, and Ethics), we explore how standards already set by Native nations in the United States, such as tribal research codes, provide direction for implementation of the CARE Principles to complement FAIR. A broader approach to policy and procedure regarding tribal participation in biomedical research is required and we make recommendations for tribes, institutions, and ethical practice.

Biobanking and public health: is a human rights approach the tie that binds?

Ethical principles guiding public health and genomic medicine are often at odds: whereas public health practice adopts collectivist principles that emphasize population-based benefits, recent advances in genomic and personalized medicine are grounded in an individualist ethic that privileges informed consent, and the balancing of individual risk and benefit. Indeed, the attraction of personalized medicine is the promise it holds out to help individuals get the "right medicine for the right problem at the right time." Research biobanks are an effective tool in the genomic medicine toolbox. Biobanking in public health presents a unique case study to unpack some of these issues in more detail. For example, there is a long history of using banked tissue obtained under clinical diagnostic conditions for later public health uses. But despite the collectivist approach of public health, the principles applied to the ethical challenges of biobanking (e.g. informed consent, autonomy, privacy) remain individualist. We demonstrate the value of using human rights as a public health ethics framework to address this tension in biobanking by applying it to two illustrative cases.

HIV epidemic and human rights among men who have sex with men in sub-Saharan Africa: Implications for HIV prevention, care, and surveillance.

Recent research has presented evidence that men who have sex with men (MSM) bear a disproportionate burden of HIV and are at increased risk for HIV in sub-Saharan Africa (SSA). However, many countries in SSA have failed to address the needs of MSM in national HIV/AIDS programmes. Furthermore, many MSM face structural barriers to HIV prevention and care, the most significant of which include laws that criminalise male-to-male sexual contact and facilitate stigma and discrimination. This in turn increases the vulnerability of MSM to acquiring HIV and presents barriers to HIV prevention, care, and surveillance. This relationship illustrates the link between human rights, social justice, and health outcomes and presents considerable challenges to addressing the HIV epidemic among MSM in SSA. The response to the HIV epidemic in SSA requires a non-discriminatory human rights approach to all at-risk groups, including MSM. Existing international human rights treaties, to which many SSA countries are signatories, and a 'health in all policies' approach provides a strong basis to reduce structural barriers to HIV prevention, care, surveillance, and research, and to ensure that all populations in SSA, including MSM, have access to the full range of rights that help ensure equal opportunities for health and wellness.

Low back pain in pregnant women attending antenatal clinic: The Aminu Kano teaching hospital experience.

BACKGROUND: The profound physiologic effects of pregnancy affect the musculoskeletal system. Pregnant women are at increased risks of low back/pelvic girdle pains. OBJECTIVE: To determine the incidence of low back/pelvic girdle pains among pregnant women. MATERIALS AND METHODS: This was a cross-sectional study conducted from May 1 to June 30, 2016, among consenting pregnant women at Aminu Kano Teaching Hospital. Ethical approval was obtained from the Hospital Ethics Committee. Information was obtained in a questionnaire on consecutive pregnant women. Data obtained were analyzed using SPSS version 18 (SPSS Inc., Chicago, Illinois, USA, 2012). Fisher's exact test was used for categorical data, and P ≤ 0.05 was considered statistically significant. RESULTS: A total of 309 pregnant women were recruited from May 1 to June 30, 2016. The mean age ± standard deviation was 28.4 ± 5.86 years. The incidence of low back pains (LBPs) and pelvic girdle pains among the pregnant women was 106 (34.3%) and 178 (57.6%), respectively. The pain was severe among 26 (9.2%) pregnant women, which warranted analgesic usage. Pain radiation was reported in> 50% of cases. There was an incidental finding of urinary incontinence in 36 (12.6%) cases. Low back/pelvic girdle pain was not associated with body mass index (BMI) (P = 0.390). CONCLUSION: The incidence of LBPs and pelvic girdle pains was high and found to be 34.3% and 57.6%, respectively. Analgesics were used especially among those with severe pains. There was an incidental finding of urinary incontinence among pregnant women with complaints of low back/pelvic girdle pains. There was no statistically significant association between LBPs and maternal BMI.

Elevated total and isoenzyme forms of acid phosphatase in falciparum malaria.

The activities of total serum acid phosphatase (E.C. 3.1.3.2) and of two of its isoenzymes, tartrate-resistant acid phosphatase and erythrocyte-specific acid phosphatase were measured in 109 adult male and female patients presenting acute falciparum malaria infection, and a normal, healthy control group comprised of 82 subjects. All the three forms of acid phosphatase were found to be significantly (p<0.05) higher during infection as compared to their activity in the control group. This result suggests that the measurement of acid phosphatase, particularly the erythrocyte isoenzyme, in serum could be potentially used as a biomarker of acute falciparum malaria infection.

The use of lysosomal enzymuria in the early detection and monitoring of the progression of diabetic nephropathy.

Recent acquisitions on the early detection and monitoring of the progression of diabetic complications (nephropathy) using the techniques of enzymology (lysosomal enzymes) are reviewed. it appears that the kidney is the principal source of urinary lysosomal enzymes. Urinary samples for lysosomal enzyme determination can be either 24-hour or spot-collection. The use of synthetic substrates (4-methylumbelliferyl substrates) provides an easy, inexpensive, sensitive and highly reproducible method of lysosomal enzyme assay. It is recommended that more than one enzyme be assayed in the process. The use of fractional enzyme excretion (FEE) ratios is further recommended. The urinary lysosomal glycosidases investigated and found to be of particular diagnostic value in the early detection of diabetic nephropathy include N-acetyl-ß-D-glucosaminidase (ß-hexosaminidase, NAG), ß-glucuronidase and ß-galactosidase, with NAG being the most useful indicator. Urinary NAG can be used in monitoring the progression of diabetic nephropathy. The fluorimetric assay of lysosomal glycosidases is particuarly recommended in developing countries since it is simple, sensitive and inexpensive.

Contraceptive choices among grand multiparous women at Murtala Mohammed Specialist Hospital, Kano.

BACKGROUND: Grand multiparity is known to be associated with pregnancy complications. Nigeria with a contraceptive prevalence of <15% and culture of early marriage in the northern part of the country, many women get to grand multiparity early in their obstetric carriers. These women contribute significantly to the bad obstetric performance indices in the country. The present study was to explore the contraceptive choices among grand multiparous women. METHODS: This study was a descriptive cross-sectional study among grand multiparous women attending an antenatal clinic. Data were collected on sociodemographic characteristics, contraceptive choices, and factors that influence such choices. The data were analyzed using Statistical Package for the Social Sciences version 18. RESULTS: There were 219 respondents. The mean age was 33.05 ± 3.17, and the mean parity was 6.48 ± 1.83. Most of the respondents (208, 95.50%) were aware of modern contraceptive methods, and oral contraceptive was the method of most of the respondents (197, 90.00%). Only 92 (42.00%) were currently using a modern contraceptive method. Being convenient for the lifestyle was the reason for the choice of a contraceptive method by many of the respondents (42, 19.10%). CONCLUSION: There was high awareness of modern contraceptive methods; however, there was low use prevalence among respondents, and the desire for more pregnancy was the reason for the nonuse.

Induction to delivery interval using transcervical Foley catheter plus oxytocin and vaginal misoprostol: A comparative study at Aminu Kano Teaching Hospital, Kano, Nigeria.

BACKGROUND: Induction of labor (IOL) is an artificial initiation of labor before its spontaneous onset for the purpose of delivery of the fetoplacental unit. Many factors are associated with its success in postdatism. OBJECTIVE: To compare the induction delivery intervals using transcervical Foley catheter plus oxytocin and vaginal misoprostol, and to identify the factors associated with successful induction among postdate singleton multiparae. MATERIALS AND METHODS: The study was a prospective randomized controlled trial of singleton multiparous pregnant women. They were randomized into two groups, one group for intravaginal misoprostol and the other group for transcervical Foley catheter insertion as a method of cervical ripening and IOL. The data were analyzed using SPSS version 17 computer software (SPSS Inc., IL, Chicago, USA). Comparisons of categorical variables were done using Chi-squared test, with P < 0.05 considered as significant. Student's t-test was used for continuous variables. RESULTS: The incidence of postdatism was found to be 136 (13.1%). The mean induction delivery time interval was shorter in the misoprostol group 70 (5.54 ± 1.8 h) than in the Foley catheter oxytocin infusion group 66 (6.65 ± 1.7 h) (P = 0.035). There was, however, no statistically significant difference in the maternal and neonatal outcomes when these two agents were used for cervical ripening and IOL. Higher parity and higher Bishop's score were the factors found to be associated with high success rate of IOL (P < 0.001). CONCLUSION: Vaginal misoprostol resulted in shorter induction delivery time interval as compared to transcervical Foley catheter. High parity and high Bishop's scores were the factors found to be associated with the success of IOL.

Serum ascorbic acid concentration in patients with acute Falciparum malaria infection: possible significance.

Falciparum malaria infection is associated with significant destruction of erythrocytes. This leads to the release of toxic metabolic products, including oxidant compounds. We measured the serum concentration of the antioxidant, ascorbic acid, in 129 patients presenting with acute falciparum malaria infection and in 65 healthy individuals. None of the study subjects administered any form of ascorbic acid supplementation within one week prior to participation in this study. The mean serum ascorbate concentration in infected adult males (n = 49, age range 18-50 years) was found to be 2.02 +/- 0.20 mg/dL, and it was 2.03 +/- 0.24 mg/dL in infected adult females (n = 56, age range 18-50 years). These values were significantly greater than the serum ascorbate levels (1.54 +/- 0.10 mg/dL) in healthy adult males (n = 28) and females (n = 28) (p < 0.05). In children (age range 3 to 5 years), the serum ascorbate concentration was significantly lower (1.95 +/- 0.20 mg/dL) during infection (n = 25) than in their healthy counterparts (2.9 +/- 0.24 mg/dL, n = 9) (p < 0.05). It is evident therefore that ascorbic acid plays a significant role in the pathogenesis of acute falciparum malaria in adults. Infected children also need to be given supplemental doses of ascorbate in view of the weakness of their immune system.