scholarly journals Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics

2021 ◽  
Vol 9 ◽  
Author(s):  
Rodney C. Haring ◽  
Jessica W. Blanchard ◽  
Josephine D. Korchmaros ◽  
Justin R. Lund ◽  
Emily A. Haozous ◽  
...  

The COVID-19 pandemic has inequitably impacted Indigenous communities in the United States. In this emergency state that highlighted existing inadequacies in US government and tribal public health infrastructures, many tribal nations contracted with commercial entities and other organization types to conduct rapid diagnostic and antibody testing, often based on proprietary technologies specific to the novel pathogen. They also partnered with public-private enterprises on clinical trials to further the development of vaccines. Indigenous people contributed biological samples for assessment and, in many cases, broadly consented for indefinite use for future genomics research. A concern is that the need for crisis aid may have placed Indigenous communities in a position to forego critical review of data use agreements by tribal research governances. In effect, tribal nations were placed in the unenviable position of trading short-term public health assistance for long-term, unrestricted access to Indigenous genomes that may disempower future tribal sovereignties over community members' data. Diagnostic testing, specimen collection, and vaccine research is ongoing; thus, our aim is to outline pathways to trust that center current and future equitable relationship-building between tribal entities and public-private interests. These pathways can be utilized to increase Indigenous communities' trust of external partners and share understanding of expectations for and execution of data protections. We discuss how to navigate genomic-based data use agreements in the context of pathogen genomics. While we focus on US tribal nations, Indigenous genomic data sovereignties relate to global Indigenous nations regardless of colonial government recognition.

2005 ◽  
Vol 16 (1) ◽  
pp. 26-30 ◽  
Author(s):  
Margaret Fearon

HIV diagnostic testing has come a long way since its inception in the early 1980s. Current enzyme immunoassays are sensitive enough to detect antibody as early as one to two weeks after infection. A variety of other assays are essential to confirm positive antibody screens (Western blot, polymerase chain reaction [PCR]), provide an adjunct to antibody testing (p24 antigen, PCR), or provide additional information for the clinician treating HIV-positive patients (qualitative and quantitative PCR, and genotyping). Most diagnostic laboratories have complex testing algorithms to ensure accuracy of results and optimal use of laboratory resources. The choice of assays is guided by the initial screening results and the clinical information provided by the physician; both are integral to the laboratory's ability to provide an accurate laboratory diagnosis. Laboratories should also provide specific information on specimen collection, storage and transport so that specimen integrity is not compromised, thereby preserving the accuracy of laboratory results. Point of Care tests have become increasingly popular in the United States and some places in Canada over the past several years. These tests provide rapid, on-site HIV results in a format that is relatively easy for clinic staff to perform. However, the performance of these tests requires adherence to good laboratory quality control practices, as well as the backup of a licensed diagnostic laboratory to provide confirmation and resolution of positive or indeterminate results. Laboratory quality assurance programs and the participation in HIV proficiency testing programs are essential to ensure that diagnostic laboratories provide accurate, timely and clinically relevant laboratory results.


2021 ◽  
Author(s):  
Tara Alpert ◽  
Erica Lasek-Nesselquist ◽  
Anderson F. Brito ◽  
Andrew L. Valesano ◽  
Jessica Rothman ◽  
...  

SummaryThe emergence and spread of SARS-CoV-2 lineage B.1.1.7, first detected in the United Kingdom, has become a national public health concern in the United States because of its increased transmissibility. Over 500 COVID-19 cases associated with this variant have been detected since December 2020, but its local establishment and pathways of spread are relatively unknown. Using travel, genomic, and diagnostic testing data, we highlight the primary ports of entry for B.1.1.7 in the US and locations of possible underreporting of B.1.1.7 cases. New York, which receives the most international travel from the UK, is likely one of the key hubs for introductions and domestic spread. Finally, we provide evidence for increased community transmission in several states. Thus, genomic surveillance for B.1.1.7 and other variants urgently needs to be enhanced to better inform the public health response.


2020 ◽  
Vol 135 (2) ◽  
pp. 189-201 ◽  
Author(s):  
Linda Rudolph ◽  
Neil Maizlish ◽  
Savannah North ◽  
Kathy Dervin

Objectives: The objective of this project was to demonstrate and assess approaches of urban local health departments (LHDs) to simultaneously address climate change, health, and equity; incorporate climate change into program practice; and participate in their jurisdiction’s climate change work. Methods: From January 2016 through March 2018, the Center for Climate Change and Health created learning activities, networking and relationship-building opportunities, communication platforms, and information sharing for 12 urban LHDs in the United States. We used administrative data and conducted interviews with participants and key informants to assess success in meeting learning collaborative goals. Results: LHDs developed diverse projects that incorporated internal capacity building, climate and health vulnerability assessments, surveillance, and community engagement. Projects fostered greater LHD engagement on climate change, broadened community partnerships, and furthered LHD integration into jurisdictions’ climate planning. LHD engagement helped shift the dialogue in the community and jurisdiction about climate change to include public health. Conclusions: LHDs have skills and expertise to rapidly partner with other governmental agencies and community-based organizations and to help communities identify vulnerabilities, take action to reduce the health harms of climate change, and—through Health in All Policies approaches and community partnerships—to ensure that climate policies are optimized for positive health and equity outcomes.


Author(s):  
Reynolds M. Salerno ◽  
Jasmine Chaitram ◽  
Joanne D. Andreadis

ABSTRACT The public health community has recognized that it cannot handle responses to all possible public health emergencies on its own. The public health sector has deep scientific expertise and excels at initial identification, complex characterization, and test development. The private sector has many resources and capabilities that can complement and augment the public health response. This is especially true in the clinical laboratory sector. Many commercial laboratories are designed for high-volume, high-throughput diagnostic testing in a way that public health laboratories are not. Significant steps have been taken since 2017 to improve the communication and coordination between public health and the private clinical laboratory community, especially during a response to a public health emergency. This paper describes the strong foundation that has been built for an improved clinical and public health laboratory response to the next public health emergency.


Author(s):  
Shanti Gamper-Rabindran

The US and Argentinian shale industry enjoyed staunch support from domestic political, financial, and legal institutions, which enabled the industry to expand while externalizing financial, public health, and environmental costs to the general public. The Argentinian government’s decision to finance shale investments and the US and Argentinian governments’ decisions to finance the industry bailout sustained the industry even as its poor financial outlook that predated the COVID-19 crisis became widely acknowledged. State and provincial governments in both the United States and Argentina employed the legal system to prohibit local government and local communities, including Indigenous communities, from restricting shale development and infrastructures in their localities. Politicians’ support for the industry, cloaked as concerns for workers and communities, fortified the industry’s privileges. Reforming the entrenched institutional support for the industry, although a formidable challenge, is necessary for these countries to shift away from oil and gas dependency.


2021 ◽  
Author(s):  
Gunnar Stoddard ◽  
Allison Black ◽  
Patrick Ayscue ◽  
Dan Lu ◽  
Jack Kamm ◽  
...  

ABSTRACTDuring the COVID-19 pandemic within the United States, much of the responsibility for diagnostic testing and epidemiologic response has relied on the action of county-level departments of public health. Here we describe the integration of genomic surveillance into epidemiologic response within Humboldt County, a rural county in northwest California. Through a collaborative effort, 853 whole SARS-CoV-2 genomes were generated, representing ∼58% of the 1,449 SARS-CoV-2-positive cases detected in Humboldt County as of mid-March 2021. Phylogenetic analysis of these data was used to develop a comprehensive understanding of SARS-CoV-2 introductions to the county and to support contact tracing and epidemiologic investigations of all large outbreaks in the county. In the case of an outbreak on a commercial farm, viral genomic data were used to validate reported epidemiologic links and link additional cases within the community who did not report a farm exposure to the outbreak. During a separate outbreak within a skilled nursing facility, genomic surveillance data were used to rule out the putative index case, detect the emergence of an independent Spike:N501Y substitution, and verify that the outbreak had been brought under control. These use cases demonstrate how developing genomic surveillance capacity within local public health departments can support timely and responsive deployment of genomic epidemiology for surveillance and outbreak response based on local needs and priorities.


2021 ◽  
pp. 003335492199037
Author(s):  
Patricia K. Foo ◽  
Berenice Perez ◽  
Neha Gupta ◽  
Gerardo Jeronimo Lorenzo ◽  
Nana-Yaa Misa ◽  
...  

Coronavirus disease 2019 (COVID-19) has disproportionately and negatively affected communities of color in the United States, especially Black, Latinx, and Indigenous populations. We report a cluster of COVID-19 cases among the Maya in Alameda County, California, most of whom were misclassified in public health data as nonindigenous Spanish-speaking people. We conducted a retrospective cohort study of all COVID-19 tests performed from April 1 through May 31, 2020, at Alameda Health System. A total of 1561 tests from 1533 patients were performed, with an overall test positivity rate of 17.0% (N = 265). We used the language field from the electronic health record to identify 29 patients as speaking an indigenous Mayan language; by medical record review, we identified 52 additional Maya patients. Maya patients had a test positivity rate of 72.8% as compared with 27.1% ( P < .001) for nonindigenous Latinx patients and 8.2% ( P < .001) for all other patients. In our sample, 39.6% of patients who had a positive test result for COVID-19 were hospitalized, 11.3% required admission to the intensive care unit (ICU), and 4.9% died of COVID-19. Maya patients had lower rates of hospitalization, ICU admission, and 30-day in-hospital mortality than non-Maya patients. We shared our data with the county health department to inform responses for education, testing, and isolation for Maya patients in Alameda County. Ongoing COVID-19 public health efforts should assess the community prevalence of COVID-19 in the Maya community and other indigenous communities and implement interventions that are linguistically and culturally appropriate.


Author(s):  
Mark Barnes ◽  
Devin Alexander Cohen

The global response to HIV/AIDS has struggled with balancing personal autonomy with public health needs over the past four decades. This article discusses the chronology of ethical developments in prevention and treatment methods, both within the United States and abroad. It tracks the globalization of the HIV/AIDS epidemic alongside the rise of the international response, particularly following the development of safe and effective HIV treatments. The ethical challenges posed by effective public health responses to the HIV/AIDS epidemic, including voluntary and mandatory antibody testing, contact tracing, partner notification, and even quarantine, are highlighted by social and political responses to restrictions on civil liberties worldwide.


2021 ◽  
Vol 21 (3) ◽  
pp. 684-690
Author(s):  
Helda Pinzon-Perez ◽  
Leoncio Vásquez Santos

Objectives: To present an instrument in Mixtec, Zapotec, and Spanish to assess the mental health of indigenous Oaxacan communities from Mexico. To provide suggestions on how this instrument could be useful for indigenous communities in other Latin American regions. Methods: This manuscript includes a literature review of articles published in mental health among communities originating from Oaxaca, Mexico and presents the process followed in the development of a culturally appropriate mental health instrument. The instrument was created by a Spanish speaking Advanced Practice Nurse and translated by a university student public health worker and a professional nurse from Oaxaca, Mexico whose native languages are Mixtec and Zapotec. Results: A culturally appropriate instrument was developed to assess the mental health of people with Oaxacan origin. This instrument includes some questions related with Covid-19. It was translated into Spanish, Mixtec, and Zapotec. The Spanish version is available in the written form but the Mixtec and Zapotec versions are available only in the audio form since they are languages of oral tradition. Conclusions: The mental health needs of Oaxacan communities living in the United States and other parts of Latin America are pressing and even more in the domain of mental health. The mental health instrument here discussed is a contribution to the understanding and solution of the identified relevant problems.


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