240087 A comparative analysis of Indigenous research guidelines to inform genomic research in Indigenous communities

Monday, October 31, 2011

Nicole Crawford, MPH , Native Hawaiian Epidemiology Center, Papa Ola Lokahi, Honolulu, HI
Maile Taualii , Native Hawaiian Epidemiology Center, Papa Ola Lokahi, Honolulu, HI
Jay Maddock, PhD , Department of Public Health Sciences, University of Hawaii, Honolulu, HI
BACKGROUND: Genetic research has potential benefits for improving health, such as identifying molecular characteristics of a disease, understanding disease prevalence and treatment, and developing treatments tailored to patients based on their individual genetic characteristics of their disease. Indigenous people are often targeted for genetic research because genes are easier to study in communities isolated from large-scale crossbreeding. While Indigenous communities remain the focal point of many genomic studies, some result in harm and unethical practice. Unfortunately, the harms of poorly formulated and unethical research involving Indigenous people have created barriers to participation that prevent critical and lifesaving research. These harms have led a number of Indigenous communities to develop guidelines for engaging with researchers to assist in safely bridging the gap between genetic research and Indigenous peoples. METHODS: A comparative analysis was performed to identify best research practices and recommendations for Indigenous groups from four countries: Australia, Canada, New Zealand and the United States. RESULTS: Results suggest the need for research ethics policies for the world's Indigenous people. Indigenous groups are most vulnerable to research exploitation and harm; therefore identifying principles that work for Indigenous people will lead to best practices for all populations. CONCLUSIONS: Development and implementation of best practices informed by ethics guidelines in Australia, Canada, New Zealand and the U.S. may be helpful to advise Indigenous leaders, policy makers, and researchers. Comparative analyses are a useful tool for identifying areas for further work in developing research ethics policy for Indigenous communities.

Learning Areas:
Ethics, professional and legal requirements
Public health or related laws, regulations, standards, or guidelines

Learning Objectives:
1. Demonstrate knowledge of Indigenous research ethical guidelines in Australia, Canada, New Zealand and the United States, with the ability to highlight topics regarding genetics and commonalities among differing ethical principles. 2. Develop policy recommendations for Indigenous populations interested in creating formal policies around tissue banking. 3. Inform the development of community-based research ethics guidelines. 4. Design appropriate policies for future genomic research with Indigenous peoples.

Keywords: Research Ethics, Indigenous Populations

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am a recent Masters in Public Health graduate from the University of Hawaii at Manoa with a specialization in Health Policy and Management. During my graduate coursework, I completed my field training at ‘Imi Hale- Native Hawaiian Cancer Network, where I was tasked to assess patient education needs for bio-banking programs in the state of Hawaii. This work led me under the guidance of Maile Tauali’i, Director of Papa Ola Lokahi’s Native Hawaiian Epidemiology Center, and her project to assess community attitudes and perceptions on bio-banking among Native Hawaiians. I began to analyze the relationship between bio-banking and the community through an indigenous lens, and it was this work that served as my capstone for my MPH candidacy.
Any relevant financial relationships? Yes

Name of Organization Clinical/Research Area Type of relationship
Papa Ola Lokahi Biobanking Employment (includes retainer)

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.