The first panels of common patterns of human genetic variation developed by the International HapMap Project did not include Polynesian populations. http://hapmap.ncbi.nlm.nih.gov/
• Unfortunately, representation of our people is also absent in the ongoing 1,000 genomes project, which aims to deepen our understanding of human genetic variation across the globe. http://www.1000genomes.org/page.php?page=data
• Moreover, the National Institutes of Health’s (NIH) CRISP grant allocation website shows that any query for grants associated with “Hawaiian” and “Genomics” over the last 10 years comes up empty. http://crisp.cit.nih.gov/crisp/crisp_query.generate_screen
If you share my frustration and believe the exclusion of our people is a disgrace stand up and help me organize community based genetic research to obtain equal representation for our people.
Mahalo Nui Loa,
Keolu
Keolu.fox@gmail.com
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E kala mai for the late response -- I haven't checked this forum for 5 years! These days I am wrapping up my Ph.D. at the University of Washington. I focus primarily on human genome sequencing technology developpment -- with a specific focus on human genetic variation and health disparities. I am glad to hear you are open to understanding the potential that genetics/genomics has to offer.
Regarding your question: Yes. I had an Illumina 5M performed on myself -- This is an experiment that assess variation in less than 1% of the human genome (5 million location/3 billion in the human genome). My maternal haplogroup is B4a1a1a, a subgroup of B4'5 (mtDNA). Classically Polynesian.
This forum is for "Scientific Hawaiians" -- Our ancestors knew the scientific method very well. Well enough to navigate our way through the seemingly infinite pacific ocean using the celestial sphere to discover the far flung island archipelagos we inhabit today. We tested and confirmed the earth was spherical while our haole counterparts in the western world had Galielo locked up in a bell tower. Yet, today using those same methods, the scientific method, multiple peer reviewed studies confirm that specific variants in genes linked to metabolic disease (T2D, obesity, & gout) contribute to the gap in health disparities we observe in PI communities are wrong?
As indigenous people we find one central idea extremely uncomfortable:
Natural selection and disease predilection are one in the same.
Genetic variants that have been identified in the mtDNA of ancient Maori remains (I'm not saying its right to excavate Maori grave sites, quite the opposite) in the in B4'5 subgroup have been associated with a significantly higher susceptibility to gout. These are the same exact genetic variants that are used to garner genealogical knowledge.
I think you will find that islanders and other native people's have been fighting against the gathering of our genetic information for a while now. The genes have been used in exploitative ways just like our other "resources." Don't worry - the lack of western knowledge about our genes doesn't contribute to us getting higher rates of diabetes anyway.
Kelea
Kaapuikinaea > Kelea K. Levy-SandfortMarch 5, 2015 at 5:53pm
I'm afraid that others are being more wary of genetic testing. I understand the scientific community wanting a hand in order to study us more, but then there are others like myself who are into genetic genealogy and it becomes helpful if we have more people tested.
And I totally agree about the the lack of western knowledge about our genes doesn't contribute to us getting higher rates of diabetes. Alas, people like eat anykine, so much easier. I'm so thankful I grew up learning how to fish and eat stuff right in our backyard as our ancestors have done for centuries!
Keolu > Kelea K. Levy-SandfortJanuary 8, 2010 at 5:53am
Aloha e Kelea,
I agree with you regarding the misuse of genetic information and appropriation of "resources" . My hope is to have Hawaiian people conducting genomic research on our own genetic information. This way we can avoid the potential for exploitation.
With regards to western knowledge I believe Hawaiian people need to engage and utilize western medicine as it is fact based and provides reproduceable treatments for various health disparities that disproportionately effect Polynesian populations. We reap the benefits of western technology such as this online forum why shouldn't we utilize western medicine as well?
If Western medicine was sustainable it would have more value to Hawaiians. If it was effective for chronic disorders there would not be a health disparity between Hawaiians and others. Dr. Judd (Anatomia) wrote that kanaka medicine is appropriate for kanaka diseases. We should explore that comment.
One the one hand I agree you. It was Hippocrates who once said "it's far more important to know what person the disease has than what disease the person has," meaning if you are kanaka maoli then you should be treated with the methods that you evolved with over time.
On the other hand we are all individuals with very diverse genomes. Not to complicate the matter but we as Hawaiian people have been admixing with other populations since initial contact from the western world. For example I am Hawaiian, Portuguese, and Israeli. This means that we as a people need to move in the direction of personalized medicine.
Regarding health disparities: As you know this is a sensitive and complicated predicament with many variables in the equation (Human Genome + socio-economic status + environment/culture = Human health state) We need multidisciplinary initiatives in community activism, bio-medical research, public health initiatives, and community education to reduce health disparities in modern Hawaiian communities.
Utilizing the power of the genetic code is potentially a way for us to reduce the burdens of health disparities in our community. We shouldn't shy away from western medicine, we should embrace it and increase the quality of peoples lives in Hawai'i and the rest of Polynesia.
The potential use and misuse of genetic information is inevitable in the future of personalized medicine.
If Polynesians are not included in global genetic panels (such as the initiatives mentioned above) that will be used to create a baseline for the future of personalized health care, our genetic history will not only be lost forever, but it will be ignored and health disparities such as diabetes, hypertension and obesity will increase exponentially.
As Hawaiians we have more than twice the rate of diabetes as our white counterparts and are nearly six times as likely as whites living in Hawaii to die from diabetes. The Office of Minority Health
ASAP we need to initiate community based research to preserve our genetic heritage. We can not be excluded and pushed around any longer. Its time to saddle up and seize equal representation.
Replies
Howzit Keolu,
Have you had your DNA tested?
Aloha e Inalako:
E kala mai for the late response -- I haven't checked this forum for 5 years! These days I am wrapping up my Ph.D. at the University of Washington. I focus primarily on human genome sequencing technology developpment -- with a specific focus on human genetic variation and health disparities. I am glad to hear you are open to understanding the potential that genetics/genomics has to offer.
Regarding your question: Yes. I had an Illumina 5M performed on myself -- This is an experiment that assess variation in less than 1% of the human genome (5 million location/3 billion in the human genome). My maternal haplogroup is B4a1a1a, a subgroup of B4'5 (mtDNA). Classically Polynesian.
This forum is for "Scientific Hawaiians" -- Our ancestors knew the scientific method very well. Well enough to navigate our way through the seemingly infinite pacific ocean using the celestial sphere to discover the far flung island archipelagos we inhabit today. We tested and confirmed the earth was spherical while our haole counterparts in the western world had Galielo locked up in a bell tower. Yet, today using those same methods, the scientific method, multiple peer reviewed studies confirm that specific variants in genes linked to metabolic disease (T2D, obesity, & gout) contribute to the gap in health disparities we observe in PI communities are wrong?
As indigenous people we find one central idea extremely uncomfortable:
Natural selection and disease predilection are one in the same.
Genetic variants that have been identified in the mtDNA of ancient Maori remains (I'm not saying its right to excavate Maori grave sites, quite the opposite) in the in B4'5 subgroup have been associated with a significantly higher susceptibility to gout. These are the same exact genetic variants that are used to garner genealogical knowledge.
Complete mitochondrial DNA genome sequences from the first New Zeal.... Michael Knapp, et al. Published online before print October 22, 2012, doi: 10.1073/pnas.1209896109
Love to know what you think.
E malama pono,
Keolu
I think you will find that islanders and other native people's have been fighting against the gathering of our genetic information for a while now. The genes have been used in exploitative ways just like our other "resources." Don't worry - the lack of western knowledge about our genes doesn't contribute to us getting higher rates of diabetes anyway.
Kelea
I'm afraid that others are being more wary of genetic testing. I understand the scientific community wanting a hand in order to study us more, but then there are others like myself who are into genetic genealogy and it becomes helpful if we have more people tested.
And I totally agree about the the lack of western knowledge about our genes doesn't contribute to us getting higher rates of diabetes. Alas, people like eat anykine, so much easier. I'm so thankful I grew up learning how to fish and eat stuff right in our backyard as our ancestors have done for centuries!
I agree with you regarding the misuse of genetic information and appropriation of "resources" . My hope is to have Hawaiian people conducting genomic research on our own genetic information. This way we can avoid the potential for exploitation.
With regards to western knowledge I believe Hawaiian people need to engage and utilize western medicine as it is fact based and provides reproduceable treatments for various health disparities that disproportionately effect Polynesian populations. We reap the benefits of western technology such as this online forum why shouldn't we utilize western medicine as well?
a hui hou,
Keolu
Mahalo nui loa for your response.
One the one hand I agree you. It was Hippocrates who once said "it's far more important to know what person the disease has than what disease the person has," meaning if you are kanaka maoli then you should be treated with the methods that you evolved with over time.
On the other hand we are all individuals with very diverse genomes. Not to complicate the matter but we as Hawaiian people have been admixing with other populations since initial contact from the western world. For example I am Hawaiian, Portuguese, and Israeli. This means that we as a people need to move in the direction of personalized medicine.
Regarding health disparities: As you know this is a sensitive and complicated predicament with many variables in the equation (Human Genome + socio-economic status + environment/culture = Human health state) We need multidisciplinary initiatives in community activism, bio-medical research, public health initiatives, and community education to reduce health disparities in modern Hawaiian communities.
Utilizing the power of the genetic code is potentially a way for us to reduce the burdens of health disparities in our community. We shouldn't shy away from western medicine, we should embrace it and increase the quality of peoples lives in Hawai'i and the rest of Polynesia.
Malama pono, a hui hou,
Keolu
If Polynesians are not included in global genetic panels (such as the initiatives mentioned above) that will be used to create a baseline for the future of personalized health care, our genetic history will not only be lost forever, but it will be ignored and health disparities such as diabetes, hypertension and obesity will increase exponentially.
As Hawaiians we have more than twice the rate of diabetes as our white counterparts and are nearly six times as likely as whites living in Hawaii to die from diabetes.
The Office of Minority Health
ASAP we need to initiate community based research to preserve our genetic heritage. We can not be excluded and pushed around any longer. Its time to saddle up and seize equal representation.
Malama Pono,
Keolu