Maui Hudson

Native Hawaiian Views on Biobanking

Genomic science represents a new frontier for health research and will provide important tools for personalizing health care. Biospecimen-based research is an important mechanism for expanding the genomic research capacity, and indigenous peoples are a target of biospecimen-based research due to their relative isolation and the potential to discover rare or unique genotypes. This study explored Native Hawaiian perceptions of and expectations for biobanking. Ten discussion groups were conducted with Native Hawaiians (N = 92), who first heard a presentation on biobanking. Six themes emerged: (1) biobank governance by the Native Hawaiian community, (2) research transparency, (3) priority of Native Hawaiian health concerns, (4) leadership by Native Hawaiian scientists accountable to community, (5) re-consenting each time specimen is used, and (6) education of Native Hawaiian communities. Considered together, these findings suggest that biobanking should be guided by six principles that comprise “G.R.E.A.T. Research” (Governance, Re-consent, Education, Accountability, Transparency, Research priorities). These recommendations are being shared with biobanking facilities in Hawai‘i as they develop protocols for biobanking participation, governance, and education. These findings also inform researchers and indigenous peoples throughout the world who are working on biobanking and genomic research initiatives in their nations.

Engaging Māori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities

Purpose: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 practice for biobanks in relation to governance, operational, and community engagement activities.Methods:The model is based on key issues of relevance to Māori that were identified as part of the Health Research Council of New Zealand–funded research project, Te Mata Ira (2012–2015).Results:This project identified Māori perspectives on biobanking and genetic research, and along with tikanga Māori it developed cultural guidelines for ethical biobanking and genetic research involving biospecimens. The model draws on a foundation of mātauranga (Indigenous knowledge) and tikanga Māori (Māori protocols and practices) and will be useful for biobanks, researchers, ethics committee members, and those who engage in consultation or advice about biobanking in local, regional, national, or international settings.Conclusion:This article describes the model and considers the policy and practice implications for biobanks seeking to address Māori ethical concerns. Although the model has focused on Māori aspirations in the New Zealand context, it provides a framework for considering cultural values in relation to other community or indigenous contexts.Genet Med 19 3, 345–351.

Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse).

Biomedical research in culturally distinct communities is often a challenge. Potential barriers to participation occur because science is presented in a format that lacks cultural acknowledgement. Investigations may also fail to showcase beneficial relevance to the communities or include them in true partnership. The history of biomedical research within Native American societies has been complicated by these issues. Historical trauma among many Native groups sometimes transcends into contemporary challenges in both recruitment to and participation particularly in biobanking research. The participants for this study included members of the Haudenosaunee, the People of the Longhouse. Native Americans, including the Haudenosaunee, endure some of the worst health disparities in the country. These include high rates of cancer, obesity, and diabetes which may be linked at least partially to genetic predisposition. Results from a Haudenosaunee urban population shared response on ways to improve recruitment strategies for biospecimen, cancer, and other health-related clinical trials. Mixed methods approaches were used, and community responses indicated the importance of creating trust through respectful partnership; promoting culturally appropriate recruitment materials; the need for a greater understanding of consenting and signature processes; the necessity for concise summary sheets; and a desire to have information that community member understand. Discussion items also include international Indigenous perspectives to biobanking and genetic-related health disparity research.

The art of dialogue with indigenous communities in the new biotechnology world

Te Hau Mihi Ata is a research project that aims to negotiate spaces for and develop processes of dialogue that allow for a deeper level of interaction between mātauranga Māori (Māori indigenous knowledge) and science. Over a two-year period a series of facilitated exchanges or “wānanga” were held focusing on areas of new technology (assisted reproductive technologies, life technologies, and future food technologies) that involved Māori scientists and people with expertise in mātauranga Māori. These dialogue events were designed to explore, through the challenge of considering new biotechnologies, the similarities and differences that emerge from approaching these issues from different knowledge paradigms. This paper will outline the key project findings from this series of exchanges including the barriers and facilitators to the dialogue process and knowledge exchange as well as discuss how participants created connections between scientific discourse and indigenous knowledge frameworks.

Te Mata Ira—Faces of the Gene: Developing a cultural foundation for biobanking and genomic research involving Māori

Te Mata Ira was a three-year research project (2012–2015) that explored Māori views on genomic research and biobanking for the development of culturally appropriate guidelines. A key component of this process has been to identify Māori concepts that provide cultural reference points for engaging with biobanking and genomic research. These cultural cues provide the basis for describing the cultural logic that underpins engagement in this context in a culturally acceptable manner. This paper outlines the role of two wānanga (workshops) conducted as part of the larger project that were used to make sense of the Māori concepts that emerged from other data-collection activities. The wānanga involved six experts who worked with the research team to make sense of the Māori concepts. The wānanga process created the logic behind the cultural foundation for biobanking and genomic research, providing a basis for understanding Māori concepts, Māori ethical principles and their application to biobanking and genomic research.

DIALOGUE AS A METHOD FOR EVOLVING MĀTAURANGA MĀORI: Perspectives on the use of embryos in research

This paper explores the epistemological divide between mātauranga Māori (Māori knowledge) and science, and considers which cultural concepts have relevance when considering the use of embryos in research. We argue that empowerment is a necessary precursor for a dialogue process to be effective and to maintain the cultural dignity and confidence of the participants. Negotiating spaces to share ideas, concepts and values between different knowledge systems is an important exercise that creates opportunities for innovative thinking. The identification of cultural cues and indigenous reference points for considering how knowledge relating to embryo research might be located within a traditional knowledge schema is a necessary type of activity to ensure mātauranga Māori maintains its usefulness for Māori in a changing society while retaining its indigenous spirit and cultural tradition.

Whakatipu rawa ma ngā uri whakatipu: Optimising the ‘Māori’ in Māori economic development

One of the great challenges for indigenous and non-indigenous entrepreneurs in the twenty-first century is to move beyond profit maximisation as an acceptable modality for doing business and gravitate towards the concept of socially optimal outcomes, where maximising community well-being and minimising externalities to the natural environment and social justice are paramount. We present findings from a case-study analysis of Māori enterprises that demonstrate a wealth of successfully kaupapa Māori (Māori ideology)-attuned strategy and policy. The case studies provide practical examples of the incorporation and expression of kaupapa Māori values into strategy and policy of Māori enterprises. We also identify the numerous challenges to implementing kaupapa Māori in the management of Māori Asset Holding Institutions and offer a way forward. Although the case studies are context specific, they provide some key principles and learning that can guide the greater uptake of kaupapa Māori entrepreneurship.

Indigenous Ethics and Biobanking: The Aotearoa New Zealand Experience

C which has been the standard therapeutic regimen for cancer has the disadvantages of conforming to the “one size fits all” style. These standard drugs fail to distinguish malignant versus normal tissue, thus bringing along a range of adverse effects. Targeted treatment on the contrary show a greater selectivity for tumor cells and causes less damage to normal cells. It is to be noted that morphologically distinct tumours show variable biological characteristics and response to treatment. It is thus becoming important to identify these targets within the cancer tissue which include the tumour cells and the tumour microenvironment (ie, stromal cells, microvessels, and host’s immune cells), all of which could serve as potential treatment targets.E nematodes in the families Steinernematidae and Heterorhabditidae are effective biological control agents. Their limited shelf-life is, however, the major impediment in their large scale commercial application. Taking advantage of their optical transparency, we clearly observed the third stage infective juveniles (IJs) of Steinernema feltiae freezing under a cryo-stage microscope. The IJs froze when the water surrounding them froze at -2°C and below. However, they avoid inoculative freezing at -1°C, suggesting cryoprotective dehydration. Freezing was evident as a sudden darkening and cessation of IJs’ movement. Freeze substitution and transmission electron microscopy confirmed that the IJs of S. feltiae freeze intracellularly. Ice crystals were found in every compartment of the body. IJs frozen at high sub-zero temperatures (-1 and -3°C) survived and had small ice crystals. Those frozen at -10°C had large ice crystals and did not survive. However, the pattern of ice formation was not well-controlled and individual nematodes frozen at -3°C had both small and large ice crystals. IJs frozen by plunging directly into liquid nitrogen had small ice crystals, but did not survive. This study thus presents the evidence that S. feltiae is only the second freeze tolerant animal, after the Antarctic nematode Panagrolaimus davidi, shown to withstand extensive intracellular freezing.The samples are registered in a software tool for content reception, management and distribution. A visual overview is given for any individual sample and its related derivatives. This allows users and/or researchers to query for samples with certain specifications that they want to use in their research projects. The software system has full tracking features needed for auditing. Integration/ImplementationR medicinal research utilizing induced stem cells (iPSCs) is one of the cutting-edge research areas in Japan. It is an element of Japan’s New Growth Strategy and a 110-billion-Yen budget created in 2013 to strengthen and accelerate stem cell research over a ten-year period. With the Japanese government’s support, nationwide stem cell research projects have been conducting and the first human clinical trial using iPSC conducted on an age-related macular degeneration patient in 2014. Under these circumstances, iPSC banking projects have been undertaken. Notably, the iPSC stock project collects HLA homogeneous cells to create clinically applicable iPSC lines. iPSC banking is a relatively new system and now faces new ethical, legal, and social issues (ELSI) and its governance. ELSI on umbilical cord blood banking for clinical use and ELSI on DNA banking for research use been actively discussed. However, ELSI on iPSC banking is not been thoroughly examined yet in Japan. Without saying anything that there has not been much research on ELSI pertaining to iPSC banking targeting children and minors, such as returning results to minors and parents. Therefore, our poster examines the ELSI on iPSC banking in paediatrics based on our experience with the ethical supports in iPSC banking for basic research. In addition, we will introduce and examine the new guidelines outlined in ‘Ethical Guidelines for Human Medical Research’ that will be enacted in April 2015, as a reference as it elaborates on clinical research pertaining to minors and the relevant assent issues.