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Successful Engagement of BioBanking Among Native Hawaiians
Transcript of Successful Engagement of BioBanking Among Native Hawaiians
Dr. Maile Taualii
Ast. Professor, Native Hawaiian and Indigenous Health
University of Hawaii, Office of Public Health Studies
Native Hawaiian Views on Biobanking
Vision: To create a biospecimen repository that is supported by the community, with meaningful, informed consent by participants, and with ethical scientific access policies, that can address health disparities issues
Focused Question: How do we effectively engage communities and participants in biospecimen repository-based research?
Social and Ethical Issues in Biospecimen Repository Development:Community Engagement, Informed Consent, and Ethical Specimen Use
The most common form of hereditary stroke disorder, and is thought to be caused by mutations of the Notch 3 gene on chromosome 19. No specific treatment is available.
Mutation Prevalent in Native Hawaiian Family – Who were targeted heavily by researchers
Community lead to believe there would be treatment
CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy).
Source: Joutel A, Corpechot C, Ducros A, et al. Notch 3 mutations in CADASIL, a hereditary adult-onset condition causing stroke and dementia. Nature 1996;383:707-710.
Kalo – Hawaiian Taro & Snails
It’s Not a Theory,
It’s Our Identity
Protest - ‘Ai Pohaku – Stone Eaters
Senate - State of Hawaii
S.B. NO. 958, S.D. 1, H.D. 2, PASSED: 3 April 2008
This Act recognizes the importance of the kalo to the heritage of the State by imposing a five-year moratorium on:
Genetically modifying any Hawaiian taro within the State of Hawaii; and
Testing, planting, or growing any Hawaiian taro within the State that has been genetically modified outside the State.
Agenda Not Driven by Native Hawaiian People
Lack of Inclusion
Would genetics be used to establish or determine Indigenous Identity for the purposes of….
Access to Benefits?
Access to Native Title?
Genomics and Identity
Knowledge, Attitudes, Perceptions of Native Hawaiians on BioBanking
92 people,10 focus groups, 5 islands
Recruited by Native Hawaiian organizations
Diverse education, occupation and age
30% had prior knowledge of biobanking
Brief overview of biobanking was provided at beginning of focus group
What do you think are some
of contributing your tissue or blood to a BioBank for research?
What are some of your
about doing this?
How and when would you like to be
asked to contribute
your blood or tissue to a BioBank?
kinds of information
, if any, would you want about the research study in which your blood or tissue is used?
What would you think if
several different researchers
wanted to use you blood or tissue for several different kinds of research? Remember that it would not be usual for you PERSONALLY to benefit from this research. Nor would your sample be linked to your name. However, it might be linked to your ethnicity, age, community, and disease.
Focus Group Questions
Themes Identified by
Members of the Native Hawaiian Community
overnance Native Hawaiian community
e-consent Every time & with aid of technology
ducation Raise awareness & understanding
ccountable NH scientists accountable to community
ransparency All aspects of research
esearch Priorities of the Native Hawaiians
“We are a people of aloha, and we believe in the process of life. For the most part our Hawaiian people want to help others, not just our own families, but we want to see people do well, regardless. And I hear that over and over again, it is part of our nature. And that’s the reason why we were so easily conquered,
because of aloha and our desire to give
, its part of that process that is in our natural reaction to care for others.
It got us into all kinds of trouble
“I would want to know who is using it, what is the benefit, what disease, ideally I would want
Hawaiians to benefit first
. If there is a limited quantity of tissue in the biobank and disease is high for Native Hawaiians would want
my tissue to be used for research that will help Native Hawaiians
“If it was someone who had a
, some kind of cultural code, if there was a cultural based organization, with a cultural code in place… But what I am suggesting is that there has to be some control over it and feedback into the community.”
Taualii, M, Davis EL, Braun KL, Tsark JU, Brown N, Hudson M, Burke W. 2014. Native Hawaiian Views on Biobanking. Journal of Cancer Education: J Cancer Educ. 2014 Mar 29.
“Doctors have always recognized that every patient is unique, and doctors have always tried to tailor their treatments as best they can to individuals. You can match a blood transfusion to a blood type — that was an important discovery. What if matching a cancer cure to our genetic code was just as easy, just as standard? What if figuring out the right dose of medicine was as simple as taking our temperature?”
- President Obama, January 30, 2015
A major piece of the President’s Precision Medicine Initiative is the development of a research cohort that will engage a million or more Americans who volunteer to contribute their health data over many years to improve health outcomes, fuel the development of new treatments for disease, and catalyze a new era of data-based and more precise preventive care and medical treatment.
The Precision Medicine Initiative Cohort Program
The cohort will broadly reflect the diversity of the U.S. population by including participants from diverse social, racial/ethnic, and ancestral populations living in a variety of geographies, social environments, and economic circumstances, and from all age groups and health statuses.
Native Hawaiians are an ideal population to engage in the Precision Medicine Initiative for five key reasons:
1) we have some of worst health disparities in the country
2) we are a relatively homogenous population making it easier to identify genetic anomalies
3) at 527,077, we are the largest singular cultural and linguistic indigenous population in the U.S.
4) our population can serve as an ideal model for other vulnerable populations
5) previous genome studies have left us out from the research
The Native Hawaiian Research Cohort
Ideal Population for Precision Medicine Initiative Native Hawaiians
The overall aim of our study is to investigate the feasibility and delineate the methodology to establish the Native Hawaiian Research Cohort consisting of volunteers who will share genetic data, biological samples, and lifestyle information to be linked to their electronic health records.
1) Apply the identified guidelines with Native Hawaiians to develop the ethical and culturally appropriate informed consent processes for tissue and data collection.
2) Conduct key informant interviews with Native Hawaiian cultural leaders to determine necessary cultural protocols for tissue, blood and urine collection, storage, disposal and processing in line with scientific protocols.
3) Identify tissue and data needs of scientists conducting research with Native Hawaiian populations.
4) Establish a Scientific and Community Advisory Council to inform tissue and data collection and release procedures.
5) Enroll 50 Native Hawaiians in the cohort to test the effectiveness of procedures designed in this study.
6) Perform key informant interviews with the 50 Native Hawaiians in the cohort to learn about their experiences with participating in the cohort.
This study will inform educational or promotional strategies that increase participation, with the prospect of decreasing disease prevalence and increasing quality of life for those diagnosed with illness among disadvantaged minority groups, as well as the general population.
This much needed study resonates with the Precision Medicine Initiative and the interests of the Native Hawaiian people to advance the discovery of disease prevention and effective treatment.
NIH agrees that “Better insights into the biology of these diseases must be made if we are to make a difference for those who suffer from them.”