Reconsidering Race and Ethnicity:
The Ethics of Data Collection & Analysis by Characteristics
Ethics Session, October 9, 2013
Beth Fredrick, Caroline Moreau, Terri Williams, Anna Kaagesten
Session Objectives
 Review ethical issues
underlying current data
collection and analysis by race
and ethnicity
 In the United States
 In Europe
 Discuss the implications for
public health through two case
studies
 Consider criteria to guide use
of racial and ethnic
classifications in the future
2
Wikipedia Definitions
 Race
A classification system used to categorize humans into large and
distinct populations or groups by anatomical, cultural, ethnic,
geographical, historical, linguistic, religious or social affiliation.
 Ethnicity
A socially defined category of people who identify with each other
based on a perceived shared social experience or ancestry.
3
Poll—How Important are Racial and Ethnic
Data in Public Health?
4
United States—In Context
 1790 Census—free white
males & females, other
persons (inc. free blacks,
“taxable Indians”) & slaves
 The “one-drop rule”
 Hispanic & Asian Pacific
Islander (1974)
 Multiculturalism
 Language, literacy, religion,
immigrant status or nationality
5
US Population by Race/Ethnicity, 2010 & 2050
5%
12%
2%
8%
4%
12%
16%
30%
Other
Asian
Black, non-Hispanic
Hispanic
65%
46%
2010
Total = 310.2 million
White, non-Hispanic
2050
Total = 439.0 million
SOURCE: U.S. Census Bureau, 2008, Projected Population by Single Year of Age, Sex, Race, and Hispanic Origin for the United
States: July 1, 2000 to July 1, 2050. http://www.census.gov/population/www/projections/downloadablefiles.html.
Health is Improving for All Racial Groups
SOURCE: US Department of Health and Human Services, Centers for Disease Control and Prevention, National
Center for Health Statistics, May 2013, DHHS Publication No. 2013-1232
Yet, Disparities Persist
Percentage of Adults (≥ 25 yrs) with Poor/Fair Health
25
20.8
20
19.2
15
11.4
10
5
0
Black, Non-Hispanic
Hispanic
Source: National Health Interview Survey, 2001-2005
White, Non-Hispanic
Are Race & Ethnicity a Proxy for Modifiable
Social Factors?
 Education
 More education leads to longer lives and better health outcomes
 Adult’s educational attainment improves their children’s health
 Income/SES
 Health status improves as income increases
 Higher income = healthier children and adults, longer life
 Neighborhood
 Poor air/water quality, substandard housing conditions, and lack of
access to nutritious foods and safe places to exercise affect health
 Features of physical, social and service environments influence
health by shaping choices and behaviors
9
Europe—In Context
 Burden of history
 Colonialism—indigenous vs. Europeans
 Nazi Europe—mass murder based on race/ethnicity/religion
 UNESCO Consensus (1950/51)
 Race is a “scientific fallacy and political danger”
 Still very influential in Europe
 Today—Racial and Ethnic Data Rarely Collected
 As a safeguard: data protection laws ban collection of “sensitive”
data
 Social constructs: racial and ethnic categories are considered
inaccurate for describing populations and analyzing social
processes
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Collecting Racial & Ethnic Data in Europe
Why?
Why not?
 Multiculturalism Model—growing ethnic
diversity
 Assimilation Model—equality achieved
through “invisibility”
 Pragmatism over ideology
 “Invisibility” doesn’t prevent
discrimination
 Social construct invented to discriminate
 Risk of persecution; dangers of
misuse and abuse
 Plurality of sources of inequalities
 Socio-economic, racial/ethnic, &
migration
 Statistics reify racial boundaries &
reinforce “stereotypes”

 Evidence informs anti-discrimination
policies in the EU
 Quantify inequalities (e.g.
migrant, Roma populations)
 Analyze specific needs of
minorities
 Monitor progress
Alternate measures of discrimination
 Immigration
 Own/parents’ country of birth
 Citizenship
 Spoken language
P Simon. Ethnic statistics and data protection in the Council of Europe countries. Report for the European Commission
against Racism and Intolerance, 2007
Poll—Is collection of racial & ethnic data
an important step in ending
discrimination?
12
A Diversity of Opinions
Results of a 2006 Survey of Institutions
By the European Commission Against Racism and Intolerance
AGREE DISAGREE
These data are useless
16
Data pose danger to individual
37
Despite possible misuse data are necessary to promote equality
and combat discrimination
14
There is significant demand in civil society for the collection of
these data
36
Historically , these data have always served to persecute or exclude
43
Statistical recognition of minorities is an important step in their
attainment of equality
Collection of these data encourage racism
6.5
15
Source ECRI-INED study 2006
P Simon. Ethnic statistics and data protection in the Council of Europe countries. Report for the European Commission
against Racism and Intolerance, 2007
Case study: Roma people in Europe
Ethical Issues to Consider
 Inclusion of minorities in research
 Clarification of the purpose of the research
 Reliance on existing definitions and categories
 Recognition of heterogeneity within groups
 Proper interpretation of causal versus non-causal associations
 Warning on essentialist interpretation of results (genetic explanation)
 Translating research results into policies
 How does the inclusion of race/ethnicity benefit racial/ethnic
populations?
 What are the possible negative consequences?
15
Case Study: Contraceptive Use and Race
Minority women are more likely than others
in the United States
to have gaps in use
8
All Women
6
White
12 months of
nonuse
1-11 months of
nonuse
13
Hispanic
13
Black
12
Other
11
0
15
18
18
16
20
40
60
80
% of at-risk women experiencing contraceptive nonuse in the past year
100
17
Case Study: Abortion, contraceptive use
and immigrant status in Sweden
Immigration and emigration to Sweden 1850-2007
Immigration
World War II
Emigration
Source: Swedish Statistics (SCB), 2007.
Predictors of having a repeat induced abortion
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Questions to Consider
 Which criteria should be used to decide whether and what type of
racial & ethnic data to collect?
 What are our ethical obligations in using data on race & ethnicity to
improve public health?
 What do we lose if we reject racial & ethnic concepts and what are the
alternatives?
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The Future?
 U.S. Census Alternative
Questionnaire Experiment
 Designed to improve
accuracy of race and ethnic
data
 Limits use of the term “race”
 Kenneth Prewitt
 Replace current race
questions with streamlined
ethnic/racial categories and
nationality
 Add parental place of birth
 Slowly phase in the use of
data to make policy
21