A5018449054- Ethics in Clinical Research
- Indigenous Health, Education, and Rights
- Environmental DNA in Biodiversity Studies
- Race, Genetics, and Society
- Research Data Management Practices
- CRISPR and Genetic Engineering
- Indigenous Studies and Ecology
- Biomedical Ethics and Regulation
- Health Policy Implementation Science
- Scientific Computing and Data Management
- International Maritime Law Issues
- BRCA gene mutations in cancer
- Molecular Biology Techniques and Applications
- Species Distribution and Climate Change
- Identification and Quantification in Food
- Intellectual Property and Patents
- Big Data Technologies and Applications
- Data Quality and Management
- Innovation and Socioeconomic Development
- Primary Care and Health Outcomes
- Coastal and Marine Management
- Global Public Health Policies and Epidemiology
- Mining and Resource Management
- Sharing Economy and Platforms
- Innovative Approaches in Technology and Social Development
University of Waikato
2015-2024
New York University
2020-2023
University of Arizona
2023
University of Otago
2022
Australian National University
2016
Institute of Environmental Science and Research
2007-2013
Rotorua Hospital
2010
Tribal Group
2009
Concerns about secondary use of data and limited opportunities for benefit-sharing have focused attention on the tension that Indigenous communities feel between (1) protecting rights interests in (including traditional knowledges) (2) supporting open data, machine learning, broad sharing, big initiatives. The International Data Sovereignty Interest Group (within Research Alliance) is a network nation-state based sovereignty networks individuals developed 'CARE Principles Governance'...
As big data, open and science advance to increase access complex large datasets for innovation, discovery, decision-making, Indigenous Peoples' rights control their data within these environments remain limited. Operationalizing the FAIR Principles scientific with CARE Data Governance enhances machine actionability brings people purpose fore resolve interests in across lifecycle.
About 40% of all health burden in New Zealand is due to cancer, cardiovascular disease, and type 2 diabetes/obesity. Outcomes for Māori (indigenous people) are significantly worse than non-Maori; these inequities mirror those found indigenous communities elsewhere. Evidence-based interventions with established efficacy may not be effective without addressing specific implementation challenges. We present an framework prevent treat chronic conditions other communities. The He Pikinga Waiora...
He Tangata Kei Tua, a relationship model for biobanks, was developed to facilitate best practice in addressing Māori ethical concerns by guiding culturally informed policy and biobanks relation governance, operational, community engagement activities.The is based on key issues of relevance that were identified as part the Health Research Council New Zealand-funded research project, Te Mata Ira (2012-2015).This project perspectives biobanking genetic research, along with tikanga it cultural...
Ethnobiology, like many fields, was shaped by early Western imperial efforts to colonize people and lands around the world extract natural resources. Those legacies practices persist today continue influence institutions ethnobiologists are a part of, how they carry out research, their personal beliefs actions. Various authors have previously outlined five overlapping “phases” of ethnobiology. Here, we argue that ethnobiology should move toward sixth phase in which scholars practitioners...
PERSPECTIVE article Front. Public Health, 24 April 2020Sec. Health Policy Volume 8 - 2020 | https://doi.org/10.3389/fpubh.2020.00111
The field of genomics has benefited greatly from its “openness” approach to data sharing. However, with the increasing volume sequence information being created and stored growing number international efforts, equity openness is under question. United Nations Convention Biodiversity aims develop adopt a standard policy on access benefit-sharing for across signatory parties. This standardization will have profound implications research, requiring new definition open redefinition not...
A recent Molecular Ecology editorial made a proactive statement of support for the "Nagoya Protocol" and principle benefit-sharing by requiring authors to provide "Data Accessibility Benefit-Sharing Statement" in their articles. Here, we encourage another step that enables Indigenous communities own definitions aspirations access alongside author's "Statement". We invite research community use Biocultural-, Traditional Knowledge-, Cultural Institution Notices help gain visibility within our...
Biomedical data are now organized in large-scale databases allowing researchers worldwide to access and utilize the for new projects. As technologies generate even larger amounts of data, governance management becoming pressing challenges. The FAIR principles (Findable, Accessible, Interoperable, Reusable) were developed facilitate sharing. However, Indigenous Data Sovereignty movement advocates greater control oversight order share on Peoples' terms. This is especially true context genetic...
Indigenous Peoples' right to sovereignty forms the foundation for advocacy and actions toward greater self-determination control across a range of domains that impact communities cultures. Declarations are rising throughout diverse fields, including Network Sovereignty, Food Energy Data Sovereignty. Research Sovereignty draws in discourse these initiatives consider their applications broader research ecosystem. Our exploration or context activities, has been focused on relationship between...
Indigenous Peoples are reimagining their relationship with research and researchers through greater self-determination involvement in governance. The emerging discourse around Data Sovereignty has provoked discussions about decolonizing data practices highlighted the importance of Governance to support decision-making control data. Given that much generated from research, governance overlap. In this paper, we broaden concept by using CARE Principles for discuss how legislation policy adopted...
Historically marginalized racial and ethnic groups Indigenous peoples are burdened by significant health inequities that compounded their underrepresentation in genetic genomic research. Of all genome-wide association study participants, ≈79% of European descent, despite this group constituting only 16% the global population. For underrepresented populations, polygenic risk scores derived from these studies less accurate predicting disease phenotypes, novel population-specific variations may...
Indigenous Peoples have historically been targets of extractive research that has led to little no benefit. In genomics, such not only exposes communities harms and risks misuse, but also deprives potential benefits. Tribes in the US exercising their sovereignty limit this practice by adopting laws policies govern on territories with citizens. Federally state recognized tribes are strongest position assert oversight. Other lack same authority, given federal governments do recognize rights...
Gene editing is arguably the most significant recent addition to modern biotechnology toolbox, bringing both profoundly challenging and enabling opportunities. From a technical point of view specificity relative simplicity these new tools has broadened potential applications. However, from an ethical it re-ignited debates generated by earlier forms genetic modification. In New Zealand gene currently considered modification subject approval processes under Environmental Protection Authority...
Biomedical research in culturally distinct communities is often a challenge. Potential barriers to participation occur because science presented format that lacks cultural acknowledgement. Investigations may also fail showcase beneficial relevance the or include them true partnership. The history of biomedical within Native American societies has been complicated by these issues. Historical trauma among many groups sometimes transcends into contemporary challenges both recruitment and...
The Earth BioGenome Project (EBP) is an audacious endeavor to obtain whole-genome sequences of representatives from all eukaryotic species on Earth. In addition the project's technical and organizational challenges, it also faces complicated ethical, legal, social issues. This paper, members EBP's Ethical, Legal, Social Issues (ELSI) Committee, catalogs these ELSI concerns arising EBP. These include legal issues, such as sample collection permitting; applicability international treaties,...