Ethical Concerns in Public Health Research Practice February

Ethical Concerns in Public Health Research & Practice February 25, 2011 9: 15 AM Ituverava, Brazil

Today • Types of ethical concerns in PH research & practice • Possible ethical concerns from site visits and fieldwork • Ethical concerns for your case studies & research • Course business

Ethics • Standards for evaluating actions as right or wrong – Based on considerations of morality

Ethical Concerns in Public Health • Continuum • Research and practice • Always solution focused

Types of Ethical Concerns in PH – Use of theory – Levels of interpretation of research results – Ignoring history – Funding biases – Focus on internal validity over external validity – Health Disparities Industry – Exporting programs to other cultures

Use of Theory • Theories limit our access to truth. – Assumes research question is already partly answered. • Q. Why is this an ethical concern?

What’s Left Out In…. – Social Production of Disease Theory? – Stages of Change Theory? – Marxist Feminist Theory? – Radical Feminist Theory? – Health Belief Model?

Levels of Interpretation of Research Results The population focus of PH Includes both: • Society-wide health concerns and • Vulnerable populations. • Interventions may be directed at either level and must be evaluated at the proper level. Q. Why is this an ethical concern?

Levels of Interpretation of Research Results Q. What level of evaluation fits…. • Primary health care for homeless in Sao Paulo?

Evaluation of Primary Health Care for Homeless in Sao Paulo City Research Questions for 2 Levels: 1. What is the availability and quality of primary health care for Sao Paulo residents who are homeless? 2. What is the availability and quality of primary health care for people who are homeless residing in the domain of a clinic with an outreach program?

What level of evaluation fits? • Car driver seatbelt policies in Texas? • Microfinance loans in Bushbuckridge? • Microfinance loans in New York City?

Ignoring History • Citing only recent articles in publications. – CBPR = recycled Participatory Action Research. Q. Why ethical concern?

Funding Biases • Corporate Funding – E. g. , Nicotine replacement therapy (NRT) funded by pharmaceutical companies (Pfizer; Glaxo. Smith. Kline get better results) – Volume of studies = hegemony = “best evidence” • NIH Funding - Anti-innovation bias

Focus on Internal Validity Over External Validity • Standards of implementation to demonstrate effectiveness = unrealistic in real-life settings. • Programs originating within communities do not have resources to evaluate at necessary level. – E. g. , CDC Best Evidence Programs • Lack of acceptability to community

Health Disparities Industry • (See Shaw-Ridley & Ridley article on our website) • Industry: – Elaborate infrastructure – Specialized set of activities – Stakeholders • Authors question the ethics of the health disparities industry

Health Disparities Industry Resources for the industry are pulled from the larger society: e. g. , citizens’ taxes; tax exemptions for organizations Little evidence of improvements in health disparities over past 25 years

Ethical Concerns Re: Health Disparities Industry 1. Industry benefits itself more than society. Causal Factors: • Excess benefits to health disparities industry = anemic conditions among vulnerable populations • Anemic conditions among vulnerable populations = flourishing health disparities industry • Excessive benefits to vulnerable populations = demise of profits = demise of Industry

Additional Ethical Concerns re: Health Disparities Industry • Illusionary collaborations • Failure to monitor quality and plan for sustainability

Exporting Programs to Other Cultures • Diverts resources from local programs. • Disproportionate exporting of Western programs – Promotes Western worldviews

U. S. Public Health Service Syphilis Study (Tuskegee), 1932 -1972 • Ethical violations in Tuskegee: – Failure to medically treat – Obstruction of obtaining medical treatment – Deception • In Guatemala: – Deliberately infected soldiers, patients in mental hospitals & prisoners with syphilis

Following 1966 Whistle Blower, Continuation of Study Condoned by • US PHS study group • CDC • AMA • NMA

Following 1972 Whistle Blower, Response of Study Group Head “The men’s status did not warrant ethical debate. They were subjects, not patients; clinical material, not sick people. ” --Dr. John Heller, Director, U. S. Public Health Service Division of Venereal Diseases

U. S. Policies to Protect Participants in Medical & Public Health Research Studies • National Research Act, 1974 • Belmont Report, 1979 • Common Rule, 1991 – Office for Human Research Protections

Human Subjects Protection 1. Respect for persons 1. Informed consent 2. Beneficence 3. Justice

Small Group Discussions 1. Possible ethical concerns observed in site visits in Brazil 2. What’s needed to address the concern

Ethical Concerns in Your Research • Consent to participate • Benefits to participants • Burdens placed on research participants Q. Examples of burdens?

Possible Burdens Placed on Your Research Participants • Stigmatization • Communication difficulties – Subtleties of language differences – Translator – Inadequately worded questions • Time lost from family, work, other plans • Feeling of invasion of privacy

Course Business • Interview practice sessions – Scheduling for 2 nd week in Viet Nam • Submit at least one of your two research task assignments while in Viet Nam • PH course – Essay due next PH class, March 7 • Case studies for Viet Nam – Begin upon arrival

Viet Nam Case Study • Decide by next research class (March 4) if same case study group (Strongly Recommended). • Viet Nam case study = 20 points. • Start work immediately upon arrival. – Open slate experiencing along streets. – Get contact info of every person you meet. – Make special note of potential translators. – Email journal authors. – Exchange contact info with Hanoi SPH students. – Seek out faculty at Hanoi University. – Start taking pictures early on. – Ask Nguyen & Christina for help, but do not depend on them. – See Dee’s assistance throughout.

Additional Requirements for Viet Nam Case Study • Compare Viet Nam to one other country of your choosing • At least four in-depth interviews, with discussion guide(s) submitted – At least two of these in Vietnamese through interpreter • At least one mapping activity