USP 515 Session 9 Notes

October 19th and 21st
Session Nine: Research and Measurement Issues
In this session we examine the role of research and research methods in helping us understand environmental justice issues and impacts. We will address the following questions:

 

General Research Questions 

1. What is research?
   • Looking for answers to questions
   • The careful, thoughtful study of phenomena using information
2. What is empirical research?
   • Research based on information
3. What is quantitative research?
   • Looking at measurable, quantifiable factors to answer questions
4. What is qualitative research?
   • Looking at case studies and stories to answer questions
5. What is community-based research?
   • Research that is done in the community
6. What is community-based participatory research? CBPR
   
   • Research that includes the community in the planning and execution of the research.
7. Who is in charge of community-based research?
   • Researchers working in the community.
8. What is the Belmont Report? How did it establish principles for the use of human subjects in scientific research in 1979?
9. What is an institutional review board? IRB
   
   • A board within an institution which decides whether the institution will approve the methodology and results of a particular research project.
10. Why are institutional review boards resistant to approving community-based research?

 

Health Disparities Research

1. What do we mean by health disparities?
   • Health disparities are the differences in health impact we see in populations with different demographic makeup, arising from the systemic denial of wealth, power, agency, and the accompanying access to healthcare, education, and protection from environmental harms.
   • Factors
     • Education
     • Wealth
     • Race
     • Gender
     • Age
   • Internalized oppression
     • Stereotype threat and standards of care
     • Stereotype lift and standards of care
   • Distrust of institutions
   • Stress (taruma, hypervigilance, environmental, internal, external, circumstantial, etc.)
   • Access to resources: food deserts, food swamps
   • Pre-existing conditions
   • Geographic factors
   • Occupation
   • Support from family/household
   • ZIP code
2. What do we mean by the terms “race” and “ethnicity”?
   • Ethnicity is the historical sociocultural background of a particular group of people, including customs, language, ideas, traditions, etc.
   • Race is a concept created by fascist eugenicists to segregate people into artificial classification systems based on their purported membership in pseudoscientific racial populations.
3. What do we know about the relationship between race, ethnicity and health disparities?
   • Race and ethnicity are among the most significant determinants of health because health resources are systematically denied to nonwhite populations and those which do not conform to white cultural norms.
4. What is meant by the concept “culturally equivalent measures?
   • When we measure disparities, we must take into account confounding variables like markers of susceptibility, access to resources, exposure to harms, and any relevant cultural connotations and vernacular differences with the terms involved which may lead to reporting different answers.
     • For example people in Puerto Rico were asked for the first time to report their race in a recent government survey. Almost everyone marked “White” despite almost no one in Puerto Rico being white. This has been attributed to a lack of understanding of the basis of the question and the meaning of the terms in the cultural context of the region.
5. What is “cultural bias”?
   • Cultural bias is assuming everyone else is like you, and failing to account for confounding variables which will distort the results of research.
   • Assumptions about knowledge
   • Product design
   • Research
   • Cultural dominance – expectations of presentation and behavior
   • particular preferences
6. What is “cultural bias in measures”?
   • Assuming that research concepts in your methodology are understood the same way in different vernaculars means you will fail to control for the variable of ethnic vernaculars.
7. What is meant by “cultural homogeneity” and why is it a problem?
   • Ignoring the demographic differences in a sample population means failing to control for significant confounding variables, and it masks the significance of those third factors.

 

Biomarkers Questions

1. Why is it important to focus on research and measurement issues as we seek to understand, document and confront environmental injustice?
   • We need to document and understand the problem for two reasons. First, as a prerequisite for articulating solutions to the problems.
   • Second as a longitudinal indicator of progress.
2. What is meant by the term “biomarkers”?
   • Biomarkers are indicators of exposure to environmental toxins. These can be found in the blood or the medical history of a subject.
3. Are biomarkers an accurate tool?
   • Biomarkers accurately reflect the exposure to environmental toxins in the sample group. A well constructed sample will accurately reflect the exposure to environmental toxins in the larger population.
4. How can we document exposure to toxins?
   • By using blood tests and other research methods to conduct population samples looking for biomarkers and then extrapolating conclusions about the larger populations.
5. How can we document unequal protection from harm?
   • By segmenting toxics exposure by demographic factors.
6. What role can community-based research play in the struggle for environmental justice?
   • Challenging the status-quo of research methods
   • Demanding attention to important issues affecting communities

 

Molecular Biomarkers Questions

1. What is a “lulu”?
   • A locally unwanted land use
2. What is a molecular biomarker?
   • A chemical signature in the blood reflecting exposure to some environmental factor
3. What do each of the concepts below refer to?
   • Markers of exposure
     • A chemical signature left in the body which reflects that a person was exposed to some environmental toxin
   • Markers of effect
     • A person who has been exposed to environmental toxins may show symptoms or side effects like cancer, asthma, diabetes, etc.
     • Lead poisoning for example leads to decreased cognitive function.
     • Exposure to air pollution leads to asthma and higher covid mortality rates.
   • Markers of susceptibility
     • These can be caused by exposure to environmental toxins, and they can exacerbate the effects of future exposure. Asthma is a good example.
     • Can be cause by the social determinants of health
       • Social determinant of health: Black in Oakland
       • Black in Oakland => 30x incidence of Asthma
       • Asthma includes markers of susceptibility like bronchospasms
   • Ethics – Weighing potential benefits as well as harms
     • Ethics is the study of moral values; an ethical claim is anything that answers the question, “What ought one to do?”
   • Informed consent:
     • Must be
       1. Voluntarily given
       2. Must fully understand and comprehend the information given
       3. Must be ethical
     • In this context, people should know what they are signing up for when they participate in this kind of research, and they should be informed about the results they recieve back.

 

ASSIGNED READING FOR SESSION NINE (click on session 9 on left to access reading) 

1. When It Comes to Racial Wealth Gap, Structural Racism Always Wins; Kenrya Rankin;  Colorlines, February 8, 2017
   • There is a huge racial wealth gap
   • For centuries white households have enjoyed wealth-building opportunities that were systematically denied to BIPOC
   • Modern policies continue to impede BIPOC from acquiring wealth equal to white households
2. Molecular Bio-markers as Measures of Environmental Justice: A Proposed Health Assessment Paradigm — Gragg, Gasana, and Christaldi
   • Environmental equity and justice is a debate about everyone having equal access to environmental protection.
   • The purpose of this article is to review and assess the current methodologies for measuring environmental justice and put forth an argument for a new health-based measurement paradigm.
     • Use the relatively new approach of molecular epidemiology designed to incorporate human dosimetry data into environmental epidemiological studies.
   • An environmental contaminant is any chemical or substance, introduced by human activity, which has been associated with an adverse health effect in laboratory animal experiments or in studies of the human populations.
   • Article’s definition of environmental justice: Equal administration of environmental protection to all.
   • (Some discussion of the history of the unjust distribution of lulus and the EJ movement)
   • Classes of biomarkers
     1. Markers of exposure: radiation, chemical burns, etc
     2. Markers of effect: cancer, etc.
     3. Markers of susceptibility: asthma, sickle cell, diabetes, etc.
   • Blood tests and other methods can reveal these markers in populations
3. Reporting individual results for biominotoring and environmental exposures: lessons learned from environmental communication case studies — Brody, Dunagan, et al
   • In 1999, Cape Cod, MA, women generously opened their doors to Silent Spring Institute researchers to conduct a study of household exposures to 89 endocrine disrupting compounds
   • Their questions raised difficult issues about whether and how to report individual results.
   • Over the last several years, other researchers have similarly offered participants their own results, and this practice is slowly becoming the norm rather than the exception.
   • As a starting point for ethical considerations, the 1979 Belmont Report, which established the basic ethical framework for modern biomedical research in the U.S., calls on researchers to avoid harm and maximize beneficence, autonomy, and justice
   • The decision about whether to receive results can be integrated into informed consent as a logical extension of this practice, which arose after past ethical abuses led to requirements for researchers to inform participants about the research protocol and its risks and benefits. Informed consent provides an early opportunity to set expectations about what participants will and won’t be able to learn from their results and ask about their choice.
   • These results are not designed for medical use and the information you receive may not suggest any actions you can take to reduce your health risk or exposure to these compounds… personal exposure reports should answer these basic questions: What did you find? How much? Where did it come from? Is it safe? What should I do?
   • Researchers and IRBs have often speculated that reporting to people on their own chemical exposures might be harmful, because results could generate excessive worry when the health effects and remedies are unclear. However, study participants generally want their results, and studies that have reported individual results along with comparative benchmarks and interpretive context find that participants benefited by learning a great deal about environmental health. They were able to understand results without undue alarm and began to consider possible exposure reduction strategies. In addition, the human research ethics principles of beneficence and autonomy and the additional perspectives of CBPR favor a “research right-to-know.” Researchers benefit from strengthened relationships with participants and new opportunities for scientific insight. Taken together, ethical principles and empirical observations suggest that individual report-back should become standard practice in most studies. Studies that have implemented individual report-back provide guidance for researchers and IRBs to adopt report-back practices that respond to the particular community context of research and help individuals understand the meaning of their results.
4. Measurement Issues in Health Disparities Research; Health Research and Educational Trust — Ramirez, Ford, et al
   • Substantial differences related to physical health and mental health outcomes have been observed across different ethnic/racial groups
   • Measurement error can occur both through cross-cultural differences in the interpretations of the meaning of concepts and of items used to measure constructs
   • Cultural and idiomatic nuances can potentially exist within populations even though they share the same language
   • Measurement error might lead to biased results, and to biased estimates of prevalence and of the magnitude of risk factors, and therefore for the development of public policies and service delivery
   • failure to account for inter- and intrarace variation creates
     problems for health care providers and/or program designers who often rely on research data as a basis for their decision making. Thus, there is a growing demand for the validation of existing measures using samples of minority group members, and for establishing the cross-ethnic equivalence of health related assessment tools
   • Measurement equivalence in the context of cross-cultural research requires attention to both conceptual and metric equivalence.
   • Within the research community, racial and ethnic measurement bias has been identified by some as a methodological issue requiring careful examination
   • Qualitative studies can be used to assess the conceptual equivalence of existing measures
   • As research increasingly takes into account, and begins to focus on differences across diverse subgroups, issues of measurement comparability among these groups are paramount. Design and sampling issues must be considered carefully as they have bearings on the adequacy and generalizability of the compared population estimates.
   • Investigators performing comparative studies face the challenge of addressing measurement equivalence, crucial for obtaining accurate results in cross-cultural comparisons.
5. Institutional review board challenges related to community-based participatory research on human exposure to environmental toxins: A case study — Brown, Morello-Frosch, et al
   • In 1979 the Belmont Report established principles for the use of human subjects in scientific research.
   • Developed partly in response to the Tuskegee syphilis study, Belmont identified three basic principles governing the ethical use of human research subjects.
     1. “respect for persons,” stressed that an individual’s decision to become a research participant must be voluntary, and called for special protection for those who lacked the capacity to make such a decision themselves
     2. “beneficence,” called on researchers to “do no harm” or barring that, to maximize the benefits of their research while reducing as much as possible the risk to the subject
     3. “justice” required careful attention to the fair distribution of risks and benefits, calling on researchers to select subjects only “for reasons directly related to the problem being studied” and to vigilantly avoid the selection of subjects for “their easy availability, their compromised position, or their manipulability.” Justice also required that those who bear the risks of research should, whenever possible, be among the first to benefit from its insights
   • Major institutional barriers exist in the way of important community based research. The following changes are suggested.
     1. Educate institutional review boards about the objectives and methods of community based researchers.
     2. Make sure academic IRBs known CBRs
     3. IRBs need to keep informed on CBRs and other cutting edge research approaches
     4. IRBs need to develop routing procedures for the review of CBR projects
     5. Provide clear guidance and tools for navigating IRB issues unique to academic-community collaboratives
     6. Regulate any conflicts of interest that IRBs may bring to the review process
     7. Reassess how IRBs oversee situations in which participants desire access to and disclosure of their own study results
     8. Encourage CBR and partners to educate IRBs about flexibility in regulations
     9. IRBs need to make a habit of working with CBRs and tribal IRBs
   • CBPR researchers report that IRBs are not generally attuned to their particular needs, due to their emphasis on individual consent that is based on a clinical model and their lack of understanding about the importance of community-level consent and the need to share individual data with participants.
   • In short, the very CBPR practices that concern many IRBs are exactly those that make community-engaged work so valuable for researching and addressing environmental justice issues.
   • IRBs will need to go beyond simply modifying traditional oversight procedures to fundamentally incorporating how CBPR ethics redefines the research enterprise itself, including researcher-participant relationships, academic-community interaction, and the right-to-know about chemicals in people’s environments, homes, and bodies

 

HOMEWORK ASSIGNMENT FOR SESSION NINE DUE October 19th and 21st

Find an article that focuses on how research is used to talk about a social, environmental, or public health problem. After reading the article, answer each of the questions below and be prepared to discuss this article in class.