Bridging the Gap and Democratizing
Scientific Research for Native
Americans
XSEDE 13: Gateway to Discovery
San Diego, CA
July 24, 2013
Dr. Lee Bitsóí
Research Associate
Harvard University
Mitakuye Oyasin and K’e
• In the Lakota language, “mitakuye oyasin”
describes how we are all related in the
universe.
• In the Diné language, the word “K’e”
embodies a similar perspective regarding
relationships while maintaining balance and
harmony with the universe.
Democratizing Science
• In “Custer Died for Your Sins: An Indian Manifesto,” Standing Rock
Sioux scholar Vine Deloria Jr. argued that non-Native researchers
and academics were mainly interested in their own research goals
and advancing their careers, and essentially not concerned about
the real challenges that American Indians/Alaska Natives face.
• Dr. Frank Dukepoo (Hopi/Laguna) also questioned the bilagaana
(Western) approach to research, especially scientific research in
American Indian/Alaska Native communities. Dr. Dukepoo always
deferred to his Native culture and upbringing whenever he
challenged the status quo.
• This type of questioning is what Dr. Kim Tallbear (Sisseton
Wahpeton) refers to as the first step in democratizing scientific
research . As Native scientists and researchers, we have made
inroads in many disciplines to advance our understanding of how to
optimize scientific discoveries for our people.
Democratizing Science
• These cultural and language barriers are some of
the challenges that I have faced in working with
the Navajo Nation to better inform them of the
potential benefits of genomic research.
• Other Native researchers have also faced similar
challenges, but they continue their efforts.
• The Navajo Nation Institutional Review Board
(IRB) includes scientists, elders, leaders and
medicine people and they stress how life is
sacred so genetic studies should not be taken
lightly.
The Platypus and My Uncle
• The platypus is native to Australia and is one of the few mammals that lays
eggs and has a placenta.
– These odd animals also have a duck's bill and thick fur coats adapted
for the icy waters where they reside.
– The male platypus can produce venom in its hind leg spurs when it is
threatened.
• A Nature (2008) magazine article describes how an international team
(from the United States, Australia, England, Germany, Israel, Japan, Spain
and New Zealand) had found that the platypus genome contained
approximately the same number (about 18,500) of protein-coding genes
as other mammals.
• Furthermore, the international team discovered that 80% of the platypus
genes are also found in humans, mice, dogs, possums and chickens.
• We are all related.
• “Sounds like they finally caught up to us...”
New Biotechnologies
• New technologies often help but also have
hindered treating disease and disability for
American Indians.
• American Indians have a critical role in defining
risk benefit that new technologies may bring.
• Training native scientists is an active step in this
effort to exercise sovereignty in the health arena.
• Genomic research lays the foundation for
improvements in treatment for illnesses through
healthcare tailored to the genotype of individual
patients.
Prevalence of Heath Conditions by
Race/Ethnicity, 2004-2007
SOURCE: KCMU analysis of 2004-2007 NHIS data.
American
Indian &
Alaska
Native
White,
NonHispanic
Hispanic
Black,
NonHispanic
Asian and
Pacific
Islander
Two or
More
Races
Two or
More
Chronic
Conditions
18%
10%
6%
11%
5%
9%
Diabetes
12%
5%
6%
8%
5%
3%
Frequently
Anxious or
Depressed
23%
16%
13%
14%
8%
21%
Obesity
39%
28%
31%
38%
12%
20%
Traditional Native Science
•
•
•
•
•
•
•
•
•
Math
Animal Husbandry
Veterinarian
Anatomy and Physiology
Chemistry
Ethnobotany
Ethnomedicine
Healer
Artist
Bachelor’s degrees conferred in
biological sciences, 2007-2008
SOURCE: U.S. Department of Education, National Center for Education Statistics, 2007-08 Integrated Postsecondary Education Data System (IPEDS), Fall 2008. (This table was prepared June 2009.)
Race/Ethnicity
Total
Male
Female
All Students
77,854
31,637
46,217
White
50,875
21,853
29,522
Total Minority
24,776
9,413
15,363
Black
6,113
1,639
4,474
Latino
5,180
2,031
3,149
12,961
5,520
7,441
522
223
299
2,203
871
1,332
Asian/Pacific
Islander
American
Indian/Alaska
Native
Non Resident Alien
Doctoral degrees conferred in biological
sciences, 2007-2008
SOURCE: U.S. Department of Education, National Center for Education Statistics, 2007-08 Integrated Postsecondary Education Data System (IPEDS), Fall 2008. (This table was prepared
June 2009.)
Race/Ethnicity
Total
Male
Female
All Students
6,918
3,403
3,515
White
3,690
1,873
1,817
1,106 (16%)
485 (14%)
621 (18%)
Black
241
91
150
Latino
253
118
135
Asian/ Pacific
Islander
595
271
324
17
5
12
2,122 (31%)
1,045
1,077
Total Minority
American
Indian/Alaska Native
Non Resident Alien
Doctoral degrees Conferred in 20072008
Source: NCES, U.S. Department of Education, National Center for Education Statistics, 2006–07 Integrated Postsecondary Education Data System (IPEDS), Fall 2007. (This
table was prepared July 2008.)
American White
Indian &
Alaska
Native
Black
Hispanic
Asian and
Pacific
Islander
NonResident
Alien
Health
Sciences/Clinical
Sciences
26
6,530
363
255
483
698
Biological and
Biomedical
Sciences
23
3,463
182
203
566
1,917
Physical Sciences
and Science
Technologies
10
2,233
100
107
249
2,147
Computer and
Information
Sciences
3
496
34
19
127
916
Reluctance to Participate
• Since the Human Genome Project, American Indians have
increasingly declined to participate as subjects in genomic
research for multiple reasons.
•
•
•
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Havasupai Tribe v. Arizona Board of Regents
Navajo Nation Moratorium on genetic research studies
Exploitation of Blood Samples:
Over 20 years ago, the Nuu-chah-nulth (Nootka) tribe in Canada
donated blood for research into the genetic causes of
rheumatoid arthritis, a disease that is rampant in their tribe. In
2002, they discovered that the specimens have been used for
other research--another example of exploitation of indigenous
peoples. (Dalton, 2002)
Indigenous Models for Research
• American Indian communities have begun experimenting
with new mechanisms for engaging with the scientific
community, including the training of their community
members as research staff and investigators.
• The Canadian Institutes of Health Research (CIHR) has
engaged in extended consultations and deliberations with
Canadian indigenous communities to develop guidelines that
protect indigenous participants and promote research.
• The Navajo Nation Health Research Code was developed by
the Navajo Nation to determine and control any research
studies that are to be undertaken within the Navajo Nation.
Pro-Indigenous Approach:
Four New Methods Warrant Special
Attention
1. Consulting with local communities.
2. Negotiating the complexities of consent.
3. Training members of local communities in science and
healthcare.
4. Training scientists to work with indigenous communities.
Implicit is a new definition of “rigorous scientific research,” one
that includes both community development and scientific
progress as legitimate objectives of genomic research.
Source: Jacobs, Bette, Jason Roffenbender, Jeff Collmann, Kate Cherry,
LeManuel Lee Bitsói, Kim Bassett, and Charles H. Evans, Jr. 2010. Bridging
the divide between genomic science and indigenous peoples. Journal of
Law, Medicine & Ethics (Fall): 684-696.
Minority Action Plan of the
National Human Genome Research Institute
• NHGRI is committed to increasing the number of individuals
from underrepresented minority groups (Native Americans,
Latino, African Americans, Pacific Islanders) who have the
training to pursue careers in genome (genomics and
bioinformatics) sciences, as well as ethical, legal and social
implications (ELSI) research.
• History of MAP programs:
– April 2001: the NHGRI convened a meeting to explore new and
innovative ideas and models for increasing the number of
underrepresented minorities (URM) pursuing research careers
in genomics and related sciences.
– October 2003: First MAP meeting was held.
– February 2007: First MAP Coordinators workshop was held.
– April 2011: A national database to track MAP participants was
established.
ELSI: Genomics in Native America
• The National Human Genome Research Institute of the National Institutes
of Health established the ELSI program in 1990 “To foster basic and
applied research on the ethical, legal and social implications of genetic
and genomic research for individuals, families and communities.”
• Thus, there are opportunities through ELSI for lawyers, sociologists,
anthropologists, and even business entrepreneurs to address multiple
ethical, legal and social issues that are best explored using
multidisciplinary approaches.
• For example, there is a need for more Native Americans to represent their
communities when it comes to genetic testing and teaching science.
There should be culturally appropriate methods and processes, as there
has been a history of mistrust with the scientific community.
• If we, as Native Americans, are trained in these fields, we can play key
roles in the development of scientific discovery that will benefit our
nations.
Partnerships
• GENA (Genetic Education for Native Americans):
A curriculum was developed and implemented in
workshops primarily in conjunction with regional
and national scientific conferences that include
substantial numbers of Native American
attendees (GENA).
• Society for Advancement of Chicanos/Latinos and
Native Americans in Science (SACNAS)
• American Indian Science and Engineering Society
(AISES)
• National Congress of American Indians (NCAI)
My Role
• To get underrepresented minority students excited about genomics and
connect them with scientists at genome centers around the country.
• Inform prospective students that the study of genomics is more than
discovering similarities between living organisms.
– For example, genomic investigations are currently responsible for disease
prevention and even cures.
• Research in this area could lead to the development of new drugs to treat
diseases like diabetes, better methods of crop production, better range
management of land, and possibly discovering new and innovative ways to
sustain the earth.
• Essentially, it could lead to a greener future for the world.
• Continue to delve into ELSI research and other interesting related topics.
Intergenerational Trauma
• Intergenerational or historical trauma (HT) has been a controversial
topic for non-Native people since there is an accepted notion that
what happened in the past is in the past.
• However, scientific research in epigenetics has begun to
demonstrate that intergenerational trauma is real and has an
impact on present day populations, and what we experience will
have affects on future generations.
• Native healers, medicine people and elders have always known this
and it is common knowledge in Native oral traditions.
• Bryan Brayboy (2005) uses TribalCrit to emphasize this by stating,
“Stories are not separate from theory; they make up theory and
are, therefore, real and legitimate sources of data and ways of
being” (P. 430).
Epigenetics
• “At the heart of this new field [epigenetics] is a simple but
contentious idea – that genes have a 'memory'. That the
lives of your grandparents – the air they breathed, the food
they ate, even the things they saw – can directly affect you,
decades later, despite your never experiencing these things
yourself. And that what you do in your lifetime could in turn
affect your grandchildren”—BBC, The Ghost in Your Genes.
• “Epigenetics adds a whole new layer to genes beyond the
DNA. It proposes a control system of 'switches' that turn
genes on or off – and suggests that things people
experience, like nutrition and stress, can control these
switches and cause heritable effects in humans” (BBC,
2012).
HT and Diabetes
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•
•
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Dr. Melissa Walls (Ojibwe), Professor at the University of Minnesota Duluth Medical School,
studies the social aspects of disease among indigenous people. Dr. Walls is leading a
longitudinal study that will follow a cohort of 250 people for four years, periodically
monitoring their self-reported stress levels and measuring their blood sugar and cortisol
levels. Chronically elevated levels of cortisol, a stress hormone, can increase blood sugar and
inhibit the effects of insulin, leading to or compounding diabetes.
Type 2 diabetes is the fourth-leading cause of death among indigenous Americans and a
major contributor to cardiovascular disease, the No. 1 killer in this population. American
Indians and Alaska Natives are more than twice as likely as other Americans to have diabetes.
Dr. Walls’ goal is to develop treatment protocols for indigenous people that take into account
their culture and history. This population copes with a disproportionate number of stressors,
says Walls, naming several: economic disadvantage, unemployment, community violence,
discrimination, and the long-term effects of historical traumas.
– HT as an etiological agent: Lived HT experiences may contribute to PTSD, grief,
depressive symptoms, etc.
Economic, political, and religious institutions of the European settlers all contributed to the
displacement and oppression of indigenous people” (Kirmayer, Tait, and Simpson 2009, p. 7;
see also King, Smith, and Gracey 2009)
Social Justice, Health Care,
Preservation for Future Generations
•
“Epigenetics is an exciting new avenue of scientific exploration that already has demonstrated
that certain exposures, especially during periods of developmental vulnerability, can cause
long-term harms to exposed individuals and sometimes their progeny. Epigenetics invalidates
the assumption that nature and nurture operate as independent forces in influencing human
development and disease.
• Numerous legal and ethical issues are raised by epigenetics, especially regarding individual and
societal responsibilities to prevent hazardous exposures, monitor health status, and provide
care. Epigenetics represents a new class of biological effects from harmful exposures and adds
a multigenerational dimension to environmentally-caused adverse health effects. Epigenetics
serves to highlight the effects of inequality in living and working conditions, as well as a range
of disparities in access to health care and other societal opportunities.
• Finally, epigenetics raises difficult questions about the obligations of society to preserve the
soundness of the human genome and epigenome for the benefit of future generations. In
developing a principle of intergenerational equity for the human genome and epigenome,
optimum social policy lies between indifference to the health burdens of future generations
and eugenic notions of manipulating heredity to improve the human condition” (p. 62).
Source: Mark A. Rothstein, Yu Cai and Gary E. Marchant. The Ghost in Our Genes: LEGAL AND
ETHICAL IMPLICATIONS OF EPIGENETICS, Health Matrix: Journal of Law Medicine, Case Western
Reserve University, Vol 19: 1, 1-62, 2009
References
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Arizona Court of Appeals. Havasupai Tribe V. Arizona Board of Regents. (2008).
[cited 2008 Dec 4]. Available from:
http://www.cofad1.state.az.us/opinionfiles/CV/CV070454.pdf.
BBC. (2012). The ghost in your genes. Retrieved on December 1, 2012, from
http://www.bbc.co.uk/sn/tvradio/programmes/horizon/ghostgenes.shtml.
Brayboy, B. M. (2005). Toward a tribal critical race theory in education. The Urban
Review, 37(5), 425-446.
Canadian Institutes of Health Research [CIHR] CIHR guidelines for health research
involving aboriginal people. (2007). [cited 2009 Jan 22]. Available online:
http://www.cihr-irsc.gc.ca/e/29134.html
Dalton, R. (2002). Tribe blasts ‘exploitation’ of blood samples. Nature Vol 420, Nov.
Developing a Framework to Guide Genomic Data Sharing and Reciprocal Benefits
to Developing Countries and Indigenous Peoples. A Colloquium held January 7-8,
2009, Georgetown University, Washington, DC.
GENA. Dignan, M. B., Burhansstipanov, L., and Bemis, L. Successful implementation
of genetic education for Native Americans workshops at national conferences.
Genetics Vol 169, (Feb 2005).
Harmon, A. (2010). Indian Tribe Wins Fight to Limit Research of Its DNA, New York
Times, April 21, 2010, Amy HarmonJacobs, Bette, Jason Roffenbender, Jeff
Collmann, Kate Cherry, LeManuel Lee Bitsói, Kim Bassett, and Charles H. Evans, Jr.
(2010). Bridging the divide between genomic science and indigenous peoples.
Journal of Law, Medicine & Ethics (Fall): 684-696.
References
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KCMU analysis of 2004-2007 NHIS data.
King Malcolm, Smith Alexandra, Gracey Michael. Indigenous Health Part 2: The
Underlying Causes of the Health Gap. The Lancet. 2009; 374:76–85.
Kirmayer Laurence, Tait Caroline, Simpson Cori. The Mental Health of Aboriginal
Peoples: Transformations of Identity and Community. In: Kirmayer L, Valaskakis
Gail G, editors. Healing Traditions: The Mental Health of Aboriginal Peoples in
Canada. Vancouver, BC: UBC Press; 2009. pp. 3–35.
Le, C. N. (2009). “Socioeconomic Statistics & Demographics” Asian-Nation: The
Landscape of America. www.asian-nation.org/demographics.shtml
Navajo Nation Health Research Code, Navajo Nation Council, April (2002).
Navajo Nation Moratorium on Genetic Research Studies, Navajo Nation Council,
April (2002).
NCES, U.S. Department of Education, National Center for Education Statistics,
2006–07 Integrated Postsecondary Education Data System (IPEDS), Fall (2007).
Walls, M. (2013). Where stress, diabetes, and culture converge, UM Duluth
Medical Bulletin, retrieved July 10, 2013, from
http://blog.lib.umn.edu/mmf/news/bulletin/2013/where-stress-diabetes-andculture-converge.html
Warren, W. C. & et al. (2008). Genome analysis of the platypus reveals unique
signatures of evolution, retrieved July 10, 2013, from
Acknowledgements
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XSEDE13: Nancy Wilkins-Diehr, Richard Tapia
Professors William M. Gelbart, MCB Harvard
Professor George Church, HMS Harvard
Professor Bette Jacobs, Georgetown Law
School
• Professor Jeff Collman, Georgetown Medical
School
For more information:
• Email: bitsoi@fas.harvard.edu
• NCAI: http://genetics.ncai.org/
• NCAI Genetics:
http://genetics.ncai.org/enhancing_genomic_
research.cfm
• NHGRI MAP: www.genome.gov/14514219