Northeast Ethics Education Partnership (NEEP) Training Resources

1. Northeast Ethics Education Partnership (NEEP) Training Resources To access NEEP’s training materials, please visit http://brown.edu/research/research-ethics/teaching-materials-presentations/teaching-materialspresentationstodownload a materials request form and then email a completed form to NEEPethics@yahoo.com.

2. Research Ethics, Culture and Community-based Research Training for Graduate Students and Faculty(also for CPBR Community Research Review and IRB Boards)NEEP is funded through a grant from the National Science FoundationEthics Education in Science and Engineering (EESE)

3. Research Ethics Focus: Group Protections • Basic human subject protections are mainly regulated for individual human subjects. • NBAC and other international guidelines do make recommendations for cultural protections and protections for communities. • In environmental health, place-based communities and cultural groups will require special considerations in research ethics.

4. Community Protections/Beneficence in Environmental Health • Ethical concerns: - Fair allocation of benefits for the community as well as generalized beneficence, - Community or cultural exploitation, forms of stigmatization - Inappropriate or harmful treatment, including culturally-inappropriate research - Forms of cultural ignorance, arrogance, ethnocentrism - Need for community consultation or partnership models - Need for intercultural methods, approaches and linguistic diversity

5. Need for research approaches with more local benefits and long-term commitment to prolonged or chronic environmental health problems. Need for data management and dissemination protocols with sensitive community or cultural data. Realize that many disadvantaged communities or cultural groups are vulnerable groups in research requiring more protections. (See training slide on Research Ethics Protections for Place-based Communities and Cultural Groups” for expanded discussion)

6. NEEP TRAINING GOALS • The Northeast Ethics Education Partnership has organized over thirty training slide shows to promote graduate student and faculty training with individual and group protections for place-based communities and cultural groups. • The following training slides are incorporated into 4- 6 modules in short course or blended on-line training, using applied ethics articles and case studies from the appropriate fields of study. • New shows are always underway.

7. Bioethical Principles for Research Ethics: The Protection of Individual Human Subjects These slides provide an overview of the concepts of the common morality, the nature of rights, and moral virtues. The four principles related to protecting human subjects in research -- beneficence, non maleficence, respect for autonomy, and justice-- are described and examples are provided. The history of human subjects protections is also reviewed, including the Nuremberg Code, the Declaration of Helsinki, the need for informed consent and the creation of Institutional Review Boards, and the Belmont Report (44 slides).

8. Informed Consent with Cultural Considerations • The basic definitions and elements of informed consent are reviewed however with an emphasis on how informed consent and respect for autonomy became problematic with those who respect group/family/tribal or community-based decisions. • Various articles provide guidance with these challenges along with methods for improving language/communication barriers to consent (44 slides).

9. Institutional Review Board (IRB) and Human Subjects Protections Summarizes key aspects of Institutional Review Board requirements for students/researchers. The Belmont Report is the guiding document on ethical research and human subjects protections, including the concepts of beneficence, respect for persons(informed consent) and justice. Next, we discuss the definition of “research” according to the IRB, the process of IRB review, and considerations related to student research (29 slides).

10. Cultural Competence and Community Studies: Concepts and Practices for Cultural Competence Provides a review of cultural competence theory; of defining cultural competence, skills that relate to being a cultural competent researcher, considerations to take when working with diverse communities, issues with intercultural language and communication, and the concepts of humility and critical consciousness (29 slides).

11. Community-Based Research & Environmental Justice Interventions: CBPR Best Practices & Intercultural Designs Part one of this presentation covers: what is community-based research? Why is it valuable? What are the ethical benefits? The CBPR process and related benefits of partnerships and collaboration are examined, as well as the importance of community review boards (Slides 1-33). The second part provides best CBPR practices with case studies in environmental justice/health communities (Slides 34-77).

12. IRB Challenges in Community-Based Participatory Research on Humans Exposure to Environmental Toxicants Adequately protecting human subjects in research goes deeper and broader than the formal IRB processes for protection. These slides discuss the variety of ethical issues related to human subjects research, including informed consent, community right-to-know and report-back of study results to research participants, and the use of community advisory boards. Several case studies are examined, specifically focusing on biomonitoring and household exposure studies and environmental justice issues. The role of IRBs, including related challenges, is also discussed (Slides 51).

13. Discourse: Forms and Uses Introduces the topic of discourse: a word used to describe communication including the use of spoken, written, signed language, visual and oral media. Discourse is usually linked to issues of defining power and political conditions in nation-states; particularly post modern or postcolonial claims of oppressed groups. The idea of overcoming power imbalances in discourse practices within community-based research is explored, as well as alternative discourse needs and forms (13 slides).

14. “Power and Privilege Issues with Culturally-Diverse Communities in Research: New Challenges of Partnership and Collaborative Research” Explores the importance of developing truly participatory research designs and having a high level of cultural knowledge and sensitivity. This is in contrast to bringing in preconceived notions, one-sided planning, or ascribing to outside expert solutions that do not fit or benefit the community (9 slides).

15. Privacy and Confidentiality: Issues in Research Emphasizes the importance of maintaining confidentiality in research and protecting research participants’ privacy and information. Privacy issues, both in the public health field and in qualitative research, are explored, as well as the various ways that confidentiality may be breached. A review of the risks to third parties’ privacy is also included(35 slides).

16. Research Ethics Protections for Place-Based Communities and Cultural Groups Provides information on both international guidelines and applied ethics articles for enhancing or requiring group protections in research, for place-based communities and cultural groups - Part One (25 Slides). A review of case studies from community-based participatory research (CBPR) with innovative research designs/methods and dissemination practices to enhance intercultural engagement and cultural sensitivity are also provided Part Two( 50 slides).

17. Working with the Community as Unit of Identity Reviews the definition and characteristics of what makes a community, how the formation of community advisory boards are instrumental to truly engaging communityand who community representatives may be in various contexts. It also discusses the idea of community capacity, and how to both build and evaluate it (15 slides).

18. Research Integrity: Problems of Scientific Misconduct Explores the concepts of scientific misconduct which can jeopardize the integrity of research, including conflict of interest, plagiarism, results suppression, falsification/ fabrication, avoiding controversial research, unethical behavior, research harassment, and questionable research practices. Environmental health case studies are presented. The ideas of co-authorship, research misconduct among graduate students, and consequences of misconduct are also explored (51 slides).

19. Ethical Theories Presentations

20. Communitarian Ethics Introduces communitarian ethics, forms of community-based moral decision-making. We review the tensions between (liberal) individualism and communitarianism;  including the criticisms of liberalism, a discussion of communitarian ethics and claims, and the critiques of communitarianism. Communitarianism recognizes the need to agree on group values and consensus decision-making as part of the effort to maintain social order while ensuring that these group forces do not suppress all autonomous expressions (17 slides).

21. Deontology and Distributive Justice Deontology is concerned with choices that are morally required, forbidden, or permitted. These slides review the various concepts that fall under deotonological ethical theory, such as obedience to duty, opposing utilitarianism, and the good vs. the right. Kantian ethics are also explored, as well as J. Rawl’s Theory of Justice (32 slides).

22. Care Ethics (The Ethics of Care) The ethics of care are reviewed, reflecting on the work of Carol Gilligan’s “A Different Voice” from feminist ethics. The relationship between ethics of care and normative ethics is explored: the morality based on universal and common principals of morality vs. relational ethics; such as understanding, empathy, emotion, co-feeling, and moral autonomy (24 slides).

23. Liberal Individualism: Ethical Philosophies of John Locke, JS Mill, Immanuel Kant, and Civil Rights Covers concepts such as classical liberalism; John Locke’s ideology on personal property rights; JS Mill’s individual liberty; and Kant’s notions of autonomy, free will, good will, moral reason, moral duty, and the categorical vs. hypothetical imperative. Bioethical principles are mostly based on liberal-individualism, with virtue ethics and some distributive justice. In the last section, the achievement of the African-Americans equal rights amendment is included  (48 slides).

24. Postmodern Ethics: Approaches to New Moral Forms and Practices Introduces postmodern ethics and their relevance to current research with theories that discuss emergent ethics, working with cultural difference and allowing for a multiplicity of voices and forms in a research practice. Levinas’s “Ethics of the Other” offers a new moral approach to research with diverse groups (14 slides).

25. Utilitarianism and Consequentialism Covers the basics of classical utilitarianism, as well as related concepts and variations such as Bentham and Mill’s utilitarianism. Utility as pleasure and pain, justice, rationalism, public utility, and utility as a social end are discussed. The second half of the presentation explores consequentialism and the various types of consequential approaches, including welfare, indirect, direct, global, motive, and scalar consequentialism (51 slides).

26. Virtue Ethics: Aristotle, Aquinas, Hildegard of Bingen, MacIntyre Provides an overview of virtue ethics from the lens of Aristotle and other philosophers listed in the title of this presentation. The ideas of excellence, right reason, intellectual and moral virtues, virtues as allegory, discernment, compassion, and self-awareness are discussed. MacIntyre’s virtues as social goods of the community are discussed (27 slides).

27. Other Training Slides Available • Informed Consent Theory • Community Partnership Ethics: Richmond Case Study • Human Rights Histories of African Americans, Hispanic Americans, Native Americans • Environmental Justice • Environmental Ethics • Participatory Research • Traditional Ecological Knowledge • Intellectual Property Rights

28. Course Syllabi and Materials • Course Syllabi - Also for review are short courses and long semester courses on research ethics, culture and community-based research. • Course Readers or Blackboard/MyCourseOn-line or Blended Training can be developed with specific modules and case studies and applied ethics articles and regulatory guidance. • Student Incentives: Research Ethics Certificate, stipends, 1-3 academic credits.

29. Teaching Methods with Grad Students • Conversational powerpoint lectures, case analysis with students in small groups or as a class, community/other speakers, youtube/film presentations. • Student presentations from research • Student research with assigned short essays and final paper, doing mock IRB application or ethical/cultural/CBPR analyses of cases.

30. Outreach to Faculty for Teaching Resources • One on one faculty meetings: co-create or follow advice for specific slide show designs, may require cases and articles related to specific disciplines or locations. Assist faculty in organizing ethical dilemmas in their disciplines and identifying training needs to deal with these dilemmas. • In class presentations: contact teaching faculty to insert one or more presentations in their regular course offerings.

31. Faculty Outreach • Faculty Teaching Data-base: provide access to teaching slides and articles/cases for each faculty’s use in the classroom; Blackboard Page. • Series of Luncheon Workshops: recruiting multiple speakers covering research ethics, culture and community-based topics. • Listservs of Faculty: Advertise training resources to faculty through emails.

32. Contact: Dianne Quigley, PhDAdjunct Assistant ProfessorNEEP Principal Investigator Center for Environmental StudiesBrown UniversityPO Box 1943, 135 Angell St.Providence, RI 02912Dianne_Quigley_1@brown.eduNEEPethics@yahoo.comhttp://brown.edu/research/research-ethics/neep