Responsible Conduct of Research with Ethnic Minority and Low SES Populations

1. Responsible Conduct of Research with Ethnic Minority and Low SES Populations Mark Roosa

2. Why is this important?Shouldn’t everyone be treated alike?

3. Justification • Iowa Stuttering Study (1932) • Tuskegee Study (1932 – 1972) • Guatemalan (prisoner, mental patient, soldier, & orphans) Study of Syphilis (1946 - 1948) *********************************** • Baltimore Lead Abatement Study (1992-1996) • Havasupai Indians – ASU (early 1990s)

4. Basic Ethical Principles – for allBelmont Report (National Commission, 1979) • Respect for Persons • Beneficence • Justice

5. Basic Ethical Principles – for all • Respect for Persons • each person is autonomous & capable of rational thought & decision making • Implications: • inform potential participants • ask people to participate, not convince or coerce • respect decisions people make • Exceptions – minors, prisoners, and adults with diminished mental capacity

6. Basic Ethical Principles – for all • Beneficence • Refers to acts of kindness or charity • Means – research conducted for common good • Maximize benefits and minimize risks • If risks, tell potential participants

7. Basic Ethical Principles – for all • Justice • Fairness in sharing both the benefits and costs of research • Equal access to research participation • Equal exposure to risks of research • Equal likelihood of benefiting from research results

8. Common Ethical Problems • Participation (Justice Principle) • Informed Consent (Respect for persons Principle) • Poor Methods or Designs (Beneficence & Justice) • Cultural Competence (Respect, Beneficence, & Justice)

9. Participation Issues • Minorities underrepresented in public health and social science research • Despite NIH declaration to include all or have scientific justification for exclusions

10. Participation Issues • Most literature on minorities features low-income families/children – middle class rarely studied • Nationally representative studies generally limited to English speakers, those with phones, those easy to find

11. Participation Issues • Recruitment methods considered standard not as useful or efficient with low-income and urban individuals • Emphasis on using a single recruitment method for all participants in a study usually means biased sample for minority groups who are over represented in poverty

12. Participation Issues • Race or Ethnicity • African Americans – Legacy of Tuskegee • Latinos in AZ currently –SB1070 • SES – lack of knowledge of what research is

13. Informed Consent Issues • Low income populations • Literacy issues – even w/o common jargon • Lack of familiarity w/ research (concern/skepticism) • Power differential between research personnel and individuals • Fear of being scammed by signing forms

14. Informed Consent Issues • Problems can be overcome with • Forms written at 5th-7th grade levels • As brief & focused as possible • Avoid jargon • Pilot testing w/ target population • Emphasize that consent is a process not a form • Culturally competent researchers

15. Poor Methods or Designs • Over use of comparative designs w/ mismatched samples • Result: deficit or cultural inferiority model • Ethnic homogenous designs useful for understanding variations w/in group • Bias in review panels and in journals against ethnic homogenous designs unless all white

16. Poor Methods or Designs • Failure to adapt methods to fit culture, literacy, lifestyle of target population • Failure to use culturally adapted theoretical models - use of one-size-fits-all approaches

17. Poor Methods or Designs • No or poor translations of measures (& all forms) • Use of measures developed with college students • vocabulary & sentence structure problems

18. Cultural Competence Issues • Failure to acknowledge cultural differences between groups, and cultural variations within groups, contributes to: • Low recruitment/participation rates • Failure to obtain “informed” consent • Failure to represent diversity w/in minority groups • Poor interview techniques

19. Cultural Competence Issues • Failure to acknowledge cultural differences between groups, and cultural variations within groups, contributes to: • Low quality data • Improper interpretation of data • Poor retention of participants • Failure of minorities to benefit from research

20. How Do We Improve • Adapt to demographic reality • Better/Broader training of next generation of researchers (cultural competence) • Increase diversity among researchers • Emphasize basic principals (Respect for Persons, Beneficence, Justice) in a multi-racial, -ethnic, and -cultural contexts • Treat all potential Ss as your grandmother