3 Explain several ethical principles that support the expectations related to the issues in the use of human subjects in research
4 Identify the nature of the IRB in the monitoring of social work research that employs human subjects
5 Report on some of the violations of human rights that led to the use of IRBs
6 Identify how cultural competence is relevant to social work research
7 Explain how cultural competence is related to various types of research
8 Identify several strategies for culturally competent evaluation
9 Report on the question of the extent to which social workers have been found to be culturally competent in survey research
10 Discuss one approach to rethinking cultural competence
A concept that binds ethics and cultural competence is the vulnerable population. People in a vulnerable population are viewed as vulnerable because they are likely to view their participation in research to be necessary because of the population in which they reside. For example, prisoners may feel that they cannot say no to the invitation to participate. Children are not viewed as being in a position to give informed consent because they are too young for this task. The institutional review board (IRB) of the University of Virginia lists several groups as being vulnerable populations. These groups include prisoners, children, cognitively impaired individuals, minorities, economically disadvantaged persons, terminally ill patients, students, and employees (Institutional Review Board for Health Sciences Research, University of Virginia, 2017).
This review board explained the inclusion of members of minority groups as follows:
In addition to requiring the equitable selection of women as research subjects, Federal regulations require the equitable selection of minorities as research subjects. The inclusion of minorities in research is important both to ensure that they receive an equal share of the benefits of the research and to ensure that they do not bear a disproportionate burden. (Institutional Review Board for Health Sciences Research, University of Virginia, 2017)
As you can see, there are two themes addressed: (1) the sufficient inclusion to the benefits of research and (2) the avoidance of excessive burden.
Section A: Ethics in the Use of Human Subjects in Research
Human subjects research is “research involving a living individual about whom an investigator (whether professional or student) conducting research obtains data through intervention or interaction with the individual, or identifiable private information” (National Institutes of Health, n.d.). The typical human subjects research that you will undertake (as a social worker or a social work student) will entail a survey of individuals where questions are asked about the variables in the study. The variables may be descriptive (gender, age, etc.) or related to study hypotheses (depression, attitudes about agency service, etc.). This means that you will be collecting data from a living individual; thus, it qualifies as being research with human subjects. If you collect identifiable private information from living persons through records, you will also be conducting research involving human subjects according to this definition from the federal government. If the data are not identifiable (e.g., the names of the persons are not attached to the data), your study does not qualify as the use of human subjects for research. If the names are with the information, however, your study qualifies for this designation, even if you do not plan to report the names of the persons with their information. If it is available to you as a researcher, your study is classified as using human subjects for research.
There are four main themes in this presentation of ethics in human service research: (1) the code of ethics as a guide, (2) the key ethical principles social workers should implement, (3) some special challenges the social worker faces in doing ethical research, and (4) the IRB as a monitor of the use of human subjects in research. You will review each of these themes in this chapter.
The Code of Ethics as a Guide for the Professional Social Worker
The Code of Ethics of the National Association of Social Worker (NASW) provides a guide for ethical practice. Section 5.02 of that code deals with the ethical use of human subjects in research. This part of the code is presented in Exhibit 3.1.
Exhibit 3.1 Section 5.02 of the NASW Code of Ethics
1 Social workers should monitor and evaluate policies, the implementation of programs, and practice interventions.
2 Social workers should promote and facilitate evaluation and research to contribute to the development of knowledge.
3 Social workers should critically examine and keep current with emerging knowledge relevant to social work and fully use evaluation and research evidence in their professional practice.
4 Social workers engaged in evaluation or research should carefully consider possible consequences and should follow the guidelines developed for the protection of evaluation and research participants. Appropriate institutional review boards should be consulted.
5 Social workers engaged in evaluation or research should obtain voluntary and written informed consent from participants, when appropriate, without any implied or actual deprivation or penalty for refusal to participate, without undue inducement to participate, and with due regard for participants’ well-being, privacy, and dignity. Informed consent should include information about the nature, extent, and duration of the participation requested and disclosure of the risks and benefits of participation in the research.
6 When evaluation or research participants are incapable of giving informed consent, social workers should provide an appropriate explanation to the participants, obtain the participants’ assent to the extent they are able, and obtain written consent from an appropriate proxy.
7 Social workers should never design or conduct evaluation or research that does not use consent procedures, such as certain forms of naturalistic observation and archival research, unless rigorous and responsible review of the research has found it to be justified because of its prospective scientific, educational, or applied value and unless equally effective alternative procedures that do not involve waiver of consent are not feasible.
8 Social workers should inform participants of their right to withdraw from evaluation and research at any time without penalty.
9 Social workers should take appropriate steps to ensure that participants in evaluation and research have access to appropriate supportive services.
10 Social workers engaged in evaluation or research should protect participants from unwarranted physical or mental distress, harm, danger, or deprivation.
11 Social workers engaged in the evaluation of services should discuss collected information only for professional purposes and only with people professionally concerned with this information.
12 Social workers engaged in evaluation or research should ensure the anonymity or confidentiality of participants and of the data obtained from them. Social workers should inform participants of any limits of confidentiality, the measures that will be taken to ensure confidentiality, and when any records containing research data will be destroyed.
13 Social workers who report evaluation and research results should protect participants’ confidentiality by omitting identifying information unless proper consent has been obtained authorizing disclosure.
14 Social workers should report evaluation and research findings accurately. They should not fabricate or falsify results and should take steps to correct any errors later found in published data using standard publication methods.
15 Social workers engaged in evaluation or research should be alert to and avoid conflicts of interest and dual relationships with participants, should inform participants when a real or potential conflict