Chapter 2: Ethical Issues in Program Evaluation

Institutional Review Boards (IRBs) Federal mandate for IRBs –Concern during 1970s about unethical research –IRBs review research objectives, methodology, and protocols Goal to protect human beings from risky, harmful, research or research not respectful of human rights and dignity Flagrant examples of harmful research –Nazi experiments –Tuskegee study of black males with syphilis in the US

Ethical Principles for Research The Belmont Report (1979) 1. Beneficence: Maximizing good outcomes while minimizing risk 2. Respect: Respecting autonomy and treating all persons with courtesy and respect 3. Justice: Reasonable, nonexploitative, and well- considered procedures, administered fairly

Ethical Guidelines 1. Research participants must be volunteers –Free from coercion –Competent to understand choices –Free to withdraw from study –Consent forms (in most cases) 2. Participants should be given sufficient information about risks and benefits

Ethical Guidelines (cont.) 3. No harm shall result as consequence of participation in the evaluation 4. Protection of sensitive information –Anonymous responses, if possible –Separation of personal identifying information from research data –Anonymity: participant cannot be identified by anyone, even researchers –Confidentiality: participant identity known to researcher but protected (e.g. special coding, data stored in locked area)

Evaluation vs. Research and IRB Ramifications Private, nonprofit agencies may not have same mandate as universities PE confined to internal monitoring and program development generally exempt from IRB requirement What is “research” can be fuzzy and involves intent –Study intended for wide dissemination and knowledge building considered “research” –Agencies not receiving federal funds not required to maintain own IRB –Does not mean ethical guidelines can be ignored All NIH-funded research requires “key personnel” have human subjects protection training

The Common Rule (1991) Department of Health and Human Services Federal Ruling 45 CFR 46 purpose to codify and standardize IRB regulations –Some studies are exempt from IRB Research in educational settings involving normal educational practices or educational tests Collection of existing publicly-available data Evaluation of public benefit or service programs –IRBs can be “expedited” if involve minimal risk –Research projects not “expedited” or “exempt” must receive full IRB review University IRBs have discretionary power to have additional regulations that may vary, depending on the university

Research with Special (Vulnerable) Populations Children – must have parental consent People with diminished mental capacity (e.g. dementia, mental retardation, severe psychosis) –May require consent from family member or guardian Prisoners – must undergo full IRB review

Diverse Cultures and Groups Must be culturally sensitive, not denigrating of culture’s norms and values Excluding minorities without cause against guidelines for federal funding Learn as much as possible about culture being studied Can lead to ethical dilemmas

Deception Should not be employed unless absolutely necessary and risk minimal Consent form must state that deception may be involved Full debriefing after the study required Alternative methodologies should be considered

Financial Compensation Reimbursing costs considered reasonable Problem with large financial compensation as “undue inducement” Check with experienced colleagues for norms regarding research compensation Can make costs of research prohibitive Small non-cash incentives can be helpful (e.g. movie passes, free food)

Control Groups Concerns that clients assigned to “no treatment” control group may be denied treatment “No treatment” groups rare in PE Other options for control groups –Standard and usual care –Alternative form of program –“Wait list” control if agency has waiting list New, untested interventions may do more harm than good or be worse than existing ones –Possible solution is to give new intervention plus usual care Quasi-experiments (not random assignment): –Compare one agency with another –Compare with clients who received services prior to new program implementation

Practitioner-Evaluator Ethical Responsibilities Ethical responsibility to conduct PE to ensure no harm done NASW Code of Ethics has guidelines for PE and protecting research participants (listed in box 2.4 of text)

Resolving Ethical Dilemmas Examine options. Write down problem. Conduct literature review on how other evaluators handled similar dilemmas Consult NASW Code of Ethics Discuss with respected colleagues, other professionals, your supervisor Consult nearest IRB Deliberate and decide