History of Research Protections for Individuals and Communities. Northern Plains Tribal Epidemiology Center Aberdeen Area Tribal Chairmen’s Health Board May 2, 2004. William L. Freeman, MD, MPH, CIP. Director of Tribal Community Health Programs, & Human Protections Administrator
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Northern Plains Tribal Epidemiology Center
Aberdeen Area Tribal Chairmen’s Health Board
May 2, 2004
Director of Tribal Community Health Programs,
& Human Protections Administrator
Northwest Indian College
360-392-4284 fax 360-647-7084 firstname.lastname@example.org
with material by:
405 African American men
impoverished sharecroppers around Tuskegee, AL 1932-72
so named by people who stutter & researchers of stuttering
Randomized trial: 12 normal-speaking orphans in IA orphanage
Social science in the service of eugenics
In the state of Vermont [VT], the first third of 20th century
Surveys of "dumb" or "delinquent" children and their families
“Dumb” or “delinquent” families were usually poor
Catholic French Canadians, Abenaki Indians, or migrants
Led to VT sterilizing some of the identified “dumb” or “delinquent” children -- "to protect the gene pool"
Poor science: did not measure "dumbness" or "delinquency"
Nancy L. Gallagher Breeding Better Vermonters: The Eugenics Project in the Green Mountain State 1999.
[Please do not turn the page of the handout until asked to do so]
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Directive - included consent "unequivocally"
"Regulations on New Therapy and Human Experimentation"
Nazis did ethically atrocious research despite regulations
Michael Grodin "Historical origins of the Nuremberg Code," in George Annas & Michael Grodin (eds) The Nazi Doctors and the Nuremberg Code 1992 p. 121-144; Paul Weindling "The origins of informed consent: the International Scientific Commission on Medical War Crimes, and the Nuremberg Code" Bulletin of the History of Medicine 2001 vol. 75, p. 37-71.
From the investigation by OPRR in 1994, and discussion with an IRB member, and Edgar O Horger et al "Cocaine in pregnancy: confronting the problem" Journal of the South Carolina Medical Association Oct 1990 vol. 86, p. 527-531.
Also the US Supreme Court, March 22, 2001, reviewed a legal case from this project (not about the research), and ruled against the city and MU (Ferguson v. City of Charleston et al).
Tuberculosis was a killer, major cause of AI/AN death
Diabetes is a killer
- Diabetes Prevention Program [“DPP”] proved that intense counseling for lifestyle change could prevent type 2 diabetes [reduce calories, especially fats; moderate exercise 30 minutes a day 5 times a week; reduce weight by 7%]
Community-Based Participatory Research
- Kahnawa:ke Schools Diabetes Prevention Project
- People Awakening Project with Alaska Native groups, about resiliency and strengths in dealing with alcoholism
early 1950s, USAF
"Do ANs survive the cold by having higher metabolism?"
Good: helped NNDOH develop prevention programs
Bad: 1st 2 articles, CDC named the Navajo Chapters
Better tribal or IRB review could have prevented this!
But the regulations [= 45 CFR 46] do not cover:
ethnographic interviews published or archived by outsiders
much research focuses on how bad things are
not on how/why people survived and do well