Potential Ethical Harms in Community Research

1
Potential Ethical Harms in Community Research
2
Western Science Approaches

• Research approaches that are academically-controll
  ed with research teams, inexperienced with
  community needs and values with limited
  provisions for community participation.
• Research designs and methods that are
  scientifically-interesting to academics but
  irrelevant and sometimes damaging to the
  community needs.

3
Western Science Approaches (cont.)

• Serious inequities in the research process in
  terms of the acquisition, interpretation and
  dissemination of knowledge for the research
  effort, leading to exploitation of community
  members/resources.

4
Western Science Approaches (cont.)

• A lack of attention to and development of group
  or communal needs/values that can be reflected in
  western scientific research practices.
• This produces ethical inadequacies in the
  research obligations of community consent,
  involvement, comprehension and benefits from a
  research effort (sometimes resulting in harms
  such as community stigmatization in publications,
  community intimidation and demoralization, or
  inadequate research whose results can shut down
  future research efforts.)

5
Western Science Approaches (cont.)

• Expert-driven research that can often exclude
  the observations, the local knowledge and
  experiences reported by community members.
• This delegitimizes human subjective experience
  for so-called value-free objective knowledge
  determined by expert scientific methods.

6
Western Science Approaches (cont.)

• Lack of long-term commitment by researchers to
  the community.
• Issues of proprietary rights to community
  research data
• Community consent procedures are not
  well-developed for research dissemination,
  publication, or uses of community archives of
  local knowledge

7
CIOMS Guidelines for Ethical Review of
Epidemiological Studies (1993)

• Provisions for Community Protections

8
A. Informed Consent Community Agreement

• When investigators work with communities, they
  will consider communal rights and protections as
  they would individual rights and protections.
• Collective will of the community, how the
  community defines itself and who represents or
  speaks for the community will need to be
  determined.

9
B. Maximizing Benefits

• Provisions for communication of study results
• Treatment or referral for health care needs
• Training local health personnel

10
C. Minimizing Harm

• Causing Harm and Doing Harm
• transgressing values
• exploiting scarce community resources,
• avoiding risks of stigmatization or economic and
  social status losses
• harmful publicity

11
Minimizing Harm (cont.)

• Thorough analysis of risks versus burdens by
  researchers with the community.
• Cultural competence
• respect for social mores
• sensitivity to different cultures
• respect for ethical standards
• Protections of Confidentiality (linked and
  unlinked information)

12
Minimizing Harm (cont.)

• Conflicts of Interest
• Investigators should disclose conflicts with
  government, labor, corporate, public interest
  groups and others who may want to use findings to
  support a product or service or distort findings
  that may not be politically convenient.

13
Principles of Beneficence and Nonmaleficence
Include

• One ought not to inflict harm
• One ought to prevent evil or harm
• One ought to remove evil or harm
• One ought to do or promote good
• Remove conditions that will cause harm to others
• Rescue persons in danger
• Help persons with disabilities

14
Principles of Beneficence

• Additionally, beneficence requires
• Truth-telling
• Confidentiality
• Privacy
• Fidelity
• Technical excellence (scientific probity,
  conscientiousness, objectivity).

15
Respect for Autonomy

• Respect for autonomy ensures a right to informed
  consent, including
• Disclosure
• Comprehension
• Voluntariness
• Competence
• Consent

16
Justice

• Justice includes
• Equitable distribution of burdens and benefits.
• Whatever respects are relevant, persons equal in
  those respects should be treated equally.
• Varied approaches to justice are found in
  utilitarian, egalitarian, communitarian, and
  libertarian ethical philosophies.

17
Features of Virtue Ethics (Fergusson 1998)

• derived from Greek and Christian philosophical
  conceptions of the good
• virtues are those habitual dispositions needed to
  achieve well-being
• virtues are related to practices in that they are
  acquired qualities that enable us to achieve the
  goods for well-being (internally and externally)

18
Features of Virtue Ethics (cont.)

• Virtue ethics stress the importance of community
  histories, traditions, conceptions of the good
  life for building practices of virtuous behavior
  needed for the shared conception of the good.
• Virtues are linked to how a life as a whole can
  possess meaning and shape, derived from where we
  are situated and the history of institutions that
  have shaped us (family, church, university,
  hospital).These histories require narrative
  display to help situate us and to show us how our
  lives intersect with the narratives others around
  us.

19
Characteristics of Virtuous Agents in Health
Professions (Meara et al. 1996)

• excellence the desire to act within high
  standards of excellence.
• discernment involving sensitivity, judgment and
  understanding needed for decisive action a
  tolerance for ambiguity, perspective-taking and
  the links between current behavior and future
  consequences.

20
Characteristics of Virtuous Agents in Health
Professions (cont.)

• compassion a regard for the welfare of others,
  sensitivity to and sympathy for their suffering,
  and actions to reduce and alleviate pain.
• self-awareness knowing ones own convictions,
  assumptions, and biases and how they are likely
  to affect ones professional and personal
  interaction with others.

21
Characteristics of Virtuous Agents in Health
Professions (cont.)

• interdependence knowing how is one
  interdependent with his or her community (or
  communities) and comprehends the communitys
  ideals, expectations, mores and sensibilities
• respectfulness particularly in regard to
  multicultural settings where virtues may be
  situational or community-specific, have different
  taxonomies than our taxonomies of virtues and
  are derived from nonwestern traditions, requiring
  an openness and willingness to change our own
  culture.

22
Communitarian Ethics (Etzioni 1996)

• People are socially constituted and continually
  penetrated by culture, by social and moral
  influences and by one another.
• Choices that people make are not free from
  cultural and social factors. To remove limits set
  by the public, on libertarian grounds, far from
  enhancing autonomy merely leaves individuals
  subject to all other influences, which reach them
  not as information or environmental factors they
  can analyze and cope with but as invisible
  messages of which they are unaware and that sway
  them in irrational ways.

23
Communitarian Ethics (cont.)

• Communitarianism recognizes the need to nourish
  social attachments as part of the effort to
  maintain social order while ensuring that these
  attachments do not suppress all autonomous
  expressions. Human sociability is necessary for
  developing human and moral potential.

24
Communitarian Ethics (cont.)

• Communitarians are very concerned with balancing
  social order and autonomy and want to guard
  against the excesses of sociability which
  suppress creativity, overconformity and the loss
  of individuality in family and communal settings.

25
Communitarian Ethics (cont.)

• Moral order rests on the sharing of core values,
  that the members must abide by these mores
  voluntarily and not by legal force. Consensus,
  in particular, helps to build the shared values
  approach for the common good (Etzioni104).

26
Communitarian Ethics (cont.)

• The self and social units to which it belongs
  need to be tied to a thicker morality which
  expresses a substantive conception of human
  nature and those goods which are to be sought
  (Fergusson138).
• Communitarians promote the importance of moral
  training within the home and school, more
  voluntary associations and local groups within a
  polity that promotes diversity.

27
The Need for Moral Dialogues in Communitarianism

• Effective moral dialogues are critical to
  communitarian societies and is a subject that
  requires much more study so they dont degenerate
  into culture wars.

28
The Need for Moral Dialogues in Communitarianism
(cont.)

• Moral dialogues have certain ground rules
• dont demonize one another
• dont affront ones deepest moral commitments and
  use self-restraint
• use less the language of rights and more the
  language of needs, wants and interests that lead
  to shared resolutions.
• leave inflammatory issues out of the debate and
  narrow the scope
• for moral dialogues to have traction, they must
  be those of convictions and commitments and not
  just of proceduralists but they require an open
  mind and a willingness to listen (Etzioni104).

29
Communitarian Perspective on Loss of Community
and Communal Values

• Communities are the primary force for reinforcing
  social webs and creating a moral infrastructure.
  Communities are the most enduring form of
  civilization (Cajete 2000).
• Communities in contemporary society have suffered
  from external impacts that have weakened communal
  care and control.

30
Perspective on Loss of Community and Communal
Values (cont.)

• From the1950s and 1960s, communities began to
  suffer from the colonization effects of large
  vertical institutions, such as state and federal
  government and corporate and military
  institutions. Local decision-making for some
  institutions moved from local levels to state and
  federal levels.

31
Perspective on Loss of Community and Communal
Values (cont.)

• Communities became heavily influenced by
  prevailing social mores and values of the culture
  at large, by outside political trends and by
  policy actions. Large conglomerates, the demands
  of outside market forces, and the regulatory
  powers of national organizations deeply affected
  community life.

32
Perspective on Loss of Community and Communal
Values (cont.)

• Community members became caught in struggles for
  community cohesion and that of individualism
  which often drew them into external ties more
  than local ones.

33
Perspective on Loss of Community and Communal
Values (cont.)

• In contemporary times, the vertical ties remain
  strong and in some cases, have increased in
  strength. This has presented a dilemma for
  community life as vertical institutions can
  mitigate the lack of resources, skills and
  expertise in a small local setting. However, the
  growth of the vertical systems produce strains
  such as financial, intellectual and moral, on the
  horizontal systems.

34
Perspective on Loss of Community and Communal
Values (cont.)

• Community relations have become strained by
  metropolitan needs where work, family, and
  community are sharply separated and sometimes are
  in opposition to one another. The metropolis does
  not generate the kinds of second languages of
  social responsibility and practices of commitment
  to the public good that we saw before the 1950s
  (Bellah 1986).

35
Post-Modern Ethics

• Contributions from postmodern ethics assist us
  with the complex moral decisions that involve
  cultural contexts, values, linguistic styles,
  etc. that are sometimes in complete opposition to
  western scientific values of objectivity and
  rationality.

36
Post-Modern Ethics (cont.)

• In postmodern ethics, subjective understandings
  of the self and the other assist us in building
  respect and identifying differences that can be
  worked into developing a deeper moral practice
  with diverse interests in decision-making.
• Deepening the ethical relation requires the need
  to have humility and a desire to consider all
  angles and situations.

37
Post-Modern Ethics (cont.)

• No research situation is isolated from broader
  social, economic and political circumstances.
  Multiple structural inequalities in research
  situations demand attention when we try to
  imagine ethical parameters.The first step would
  seem to be a recognition not just of potential
  chasms but of pre-existing subtler cracks and
  fissures with all their insidious ramifications
  (Gold 20013).
• Encompassing and structural hierarchical
  conditions need discussion, unequal power
  relations and the blindness of researchers power
  must be brought into view.

38
Post-Modern Ethics (cont.)

• In postmodern ethics, one is warned against the
  perception of the research subject as an isolated
  liberated self but to see instead a relational
  and contingent constitution of the subject. This
  requires an emergent ethics which would locate
  ethical discussion in the negotiation of
  individual and communal interests, through
  conversations and negotiations with community
  members instead of predetermined practices to
  search there for ethics as well (Gold 2001).

39
Post-Modern Ethics (cont.)

• Postmodern ethics will bring forth the struggles
  for power. It seeks to achieve a juxtaposition of
  widely different genres, different philosophical
  idioms and a wide range of views. It encourages a
  discussion of what isnt working and what is the
  work to be done (Wyshongrod 1990xxii).

40
Post-Modern Ethics (cont.)

• Postmodern ethics promotes encounters with
  alterity, with otherness, where we can feel how
  our own conceptual moorings are under attack and
  we have a deep responsibility to open ourselves
  up to otherness.
• Postmodern ethics moves us toward open, playful,
  optative, disjunctive, displaced or indeterminate
  forms as we seek direction with complexity and
  uncertainties (Wyshongrod).

41
Post-Modern Ethics (cont.)

• Narrative conceptions of ethics are needed the
  life story, the multiplicity of voices, its
  openendedness. Languages of narrative and visual
  arts are discourses of power what individual or
  group authorizes discourse whose power supports
  what discourse.

42
Post-Modern Ethics (cont.)

• Moral consciousness is not an experience of
  values but an access to the deep subjectivity of
  our own beings to places within ourselves that
  are outside our conscious control. An
  unfamiliarity with the movement toward that
  subjectivity will lead to a suppression of
  otherness in other human beings (Critchley
  199630)

43
Scientific-Rational Approach

• Identifying environmental hazards and toxicants.
• Assessment of biological mechanisms through which
  toxics affect health.
• Estimates of exposures to humans/environment to
  identify susceptible populations.
• Evaluation of interventions to mitigate harm

44
Community-based Approach

• Organizing community representatives to deal with
  polluters and external researchers.
• Evaluation of the moral behavior of company and
  scientists with the community.
• Identification of disparities of power and
  privilege.
• Development of intervention approaches requiring
  equity in representation, information/knowledge
  values, risk dialogues and in research and
  mitigation approaches.

45
Collective List of Research Ethics and CBPR
Recommendations (Quigley 2006)

• Preparation by Researchers for Community Health
  Research
• Contacting community leaders about health
  research intentions
• Understanding community conditions subcultural
  contexts, values, beliefs, socio-economics,
  geography, demographics,etc.

46
Collective List of Research Ethics and CBPR
Recommendations (cont.)

• Developing the Collaboration or Partnership
• Recruiting Community Advisory Committees
• Initial Administrative Arrangements between
  Researchers and Community Members.
• Representation/Involvement of Community Members
  in All Stages of Research Process

47
Collective List of Research Ethics and CBPR
Recommendations (cont.)

• Equity Reimbursement or Incentives for the
  Community for Involving the Community in the
  Research Execution
• Qualitative Local Knowledge Collection,
  Incorporation of Community Knowledge Values in
  the Research Questions/Design
• Cultural Sensitivity Training

48
Collective List of Research Ethics and CBPR
Recommendations (cont.)

• Informed Consent Issues
• Community Education on Risks and Benefits of the
  Research Proposed
• Full Disclosure of Risks of Previous
  Interventions
• Training on Health Research Methodologies or Risk
  Intervention
• Autonomy, Confidentiality, Voluntariness

49
Collective List of Research Ethics and CBPR
Recommendations (cont.)

• Informed Consent Issues (cont.)
• Data Control and Ownership, Interpretation,
  Dissemination, Publication
• Developing protocols with the community for data
  ownership, dissemination, and publication
• Agreement on procedures for conflicts in data
  interpretation
• Research Sustainability Issues
• Assessment of Research Impact and Empowerment,
  Long-term Research Commitment

50
Organizing Community Representation

• How is Community defined? Common definitions
  include these elements
• Sense of belonging, membership
• Common experiences and history linked to place
  and emotional/spiritual connection
• Fulfillment of individual and social needs
• Influence the individual and community feel
  that they matter.

51
Organizing Community Representation

• Definition of community (cont).
• Positive valuing of unity, diversity and cultural
  pluralism
• Commitment to shared values and meanings
• Social ties interpersonal relationships,
  family, classmates, co-workers, support groups,
  friends, neighbors, other local associations.

52
Organizing Community Representation

• Who Are Community Representatives in
  Environmental Health Decisions?
• Representatives from existing community health or
  environmental organizations.
• Representatives of affected groups (by disease,
  exposures, proximity to pollution source)
• Mixed community leaders - positional and
  reputational (political, religious, social, etc.)
• Social/political activists (health, environment,
  peace, arts, etc.)

53
Organizing Community Representation

• Who Are Community Representatives in
  Environmental Health Decisions? (cont.)
• Keepers of cultural knowledge, local traditions,
  community history, or related knowledge (elders,
  local specialists).
• Representation of marginal groups (cultural ,
  racial, disabled, other..).
• Community reps linked to regional, state,
  national, international networks experienced with
  environmental health issues.

54
Some Ethical Considerations in Dialogues for
Decision-making on Environmental Health Risks

• What are different definitions of the problem
  and the relevant facts and information needed
  to deal with the problem?
• How do these reflect the subcultural contexts,
  traditions, situations and conceptual moorings of
  the stakeholders?

55
Some Ethical Considerations in Dialogues for
Decision-making on Environmental Health Risks

• Whose value approaches have dominated past
  debates (scientific-rational, utilitarian,
  communal)? Have there been disparities in power,
  privilege, knowledge values, and language felt by
  stakeholders? Are these acknowledged? Can these
  be brought into an improved leveling of
  participation?

56
Some Ethical Considerations in Dialogues for
Decision-making on Environmental Health Risks

• What are ethical justifications for proposals for
  the distribution of benefits and burdens to deal
  with risk issues?
• Are we working with juxtapositions of viewpoints,
  giving considerations to each stakeholders truth
  claims and encouraging movement toward those
  considerations?

57
How are we addressing the moral dimensions of
these common technical risk decisions?

• (Sharp, Environmental Health Perspectives, Nov.
  2003)
• Determining levels of risk sufficient to regard a
  substance as a potential health or ecological
  threat.
• How to disclose this information to those who are
  at risk from this toxicant with effective
  communication strategies?

58
How are we addressing the moral dimensions of
these common technical risk decisions?

• How are we choosing who and where to study
  (choosing study subjects or areas for
  environmental sampling or monitoring)? Are social
  justice issues considered in these choices,
  disparities in power and privilege that are
  underlying deeper ethical problems in social
  relationships?

59
How are we addressing the moral dimensions of
these common technical risk decisions?

• Assessing biological mechanisms through which
  environmental toxicants influence health
  outcomes. (ethical issues surrounding the use of
  animal experiments and modeling Sharp 3)
• How will the results of the research be used,
  particularly in influencing scientific policy
  decisions?
• How will uncertain and ambiguous results be
  interpreted?

60
Other considerations include

• Who owns the data collected?
• What are provisions for the future uses of data
  by researchers or the transfer of data to other
  research institutions?
• What are the ethical challenges that should be
  considered with misuse of community data and
  research results?

61
Other considerations include

• What are protocols and procedures in place for
  the dissemination of research results?
• What are the social, cultural and moral impacts
  of the health/ecological threat from the
  contamination?
• What are recommendations for mitigating the
  relational impacts of environmental health
  threats?

62
Ethical Foundations Of Indigenous Science

• Knowledge as Participation and Relational
• Knowledge as Process and Context-Dependent
• Perceiving and Opening to the Flux/Spirit of
  Knowledge
• Knowledge as Embedded Traditional Ecological
  Knowledge (TEK)

63
Ethical Foundations Of Indigenous Science (cont.)

• Native Science is based on subjective experience
• To gain inner sensibilities
• To experience the essences of nature
• To acquire metaphoric and transcendent
  understandings of experience (Cajete 2000)

64
Indigenous Science Applications To Western
Research Paradigms (Arquette et al. 2002)

• Expanding Research End-points
• Assessing both qualitative and quantitative
  impacts Akwesasne-Mohawks use an integrated risk
  assessment framework that includes impacts to
  humans, the natural world, cultural, social,
  subsistence, economic and spiritual practices.
• Subjective data collection through community
  interviews and other sources must be integrated
  with quantitative data collection for more robust
  research findings.

65
Indigenous Science Applications To Western
Research Paradigms

• Expanding Research Questions
• Culturally-based and community-specific
  definitions of health and risk must be determined
  in collaboration with community members.
• An expanded definition of health will require
  qualitative data collection on social, physical,
  and cultural determinants of health and how toxic
  contamination affects these. Such determinants
  include safety of work environments, social
  supports, equity, language, respect, and
  relatedness with the natural world.

66
Partnership Processes Of Research

• Akwesasne and Canadian Tribal Groups Require
  Community Partnership Control with Academic
  Researchers
• Community Advisory Committees hiring Native
  researchers, consensus decision-making,
  resource-sharing in research budget, community
  consent procedures for research data
  dissemination.
• Integration of Ceremonial/Spiritual Practices
  Respect, Building Trust, Data Collection,
  Knowledge-Sharing
• Specialized Strategies for Communication,
  Participation and Respect for Multidisciplinary
  Approaches

67
Benefits Of Indigenous Science Applications

• Research Results Include Interdependent,
  Relational and Moral Aspects of Contamination
  Impacts
• Knowledge collection of environmental health
  impacts and natural resource uses are expanded to
  build a deeper understanding of the
  relationality, morality and interconnected
  effects of natural resource and technological
  activities of human/nonhuman populations.

68
Benefits Of Indigenous Science Applications
(cont.)

• Research Data is More Robust than Current
  Outcomes
• These indigenous approaches teach us new research
  practices/methods for acquiring qualitative,
  community-generated data that highlight
  socio-cultural and spiritual relations, impacts,
  and restoration needs. This data is far more
  robust than current methods.

69
Benefits Of Indigenous Science Applications
(cont.)

• Research Processes Improve Conditions of Social
  Inequities
• These approaches improve the social processes of
  research, overcoming the social inequities in the
  vertical, expert-driven western scientific
  practices requiring them to respect and value
  community processes, knowledge and needs. This
  helps to strengthen, restore and preserve the
  horizontal, moral ties of community in its
  engagement with vertical corporate and government
  institutions.

70
References

• Council for International Organizations of
  Medical Sciences. (1993).International ethical
  guidelines for biomedical research involving
  human subjects. Geneva
• The National Commission for the Protection of
  Human Subjects of Biomedical and Behavioral
  Research (1979). The Belmont Report. Ethical
  Principles and Guidelines for the Protection of
  Human Subjects of Research
• Arqette, M., Cole M, Cook K, La France B, Peters
  M., Ransom J, Sargent E, Smoke V, Stairs A. 2002,
  Holistic Risk-Based Environmental
  Decision-making A Native Perspective
  Environmental Health Perspective, 110
  (suppl.2)259-264
• Beauchamp, T. and Childress, J. 2001, Principles
  of Biomedical Ethics, Oxford University Press,
  Oxford, U.K
• Bellah, Robert, Richard Madson, William Sullivan,
  Ann Swidler, Steven Tipton, 1986 Habits of the
  Heart, Harper and Row, New York
• Cajete, Gregory,2000. Native Science, Clear
  Light Publishers, Santa Fe, NM
• Critchley, S. and Dew, P. Deconstructive
  Subjectivities, State University of New York 1996
• Etzione, A., The New Golden Rule. Basic Books
  (Harper Collins), NY 1996
• Fergusson, D. Community, Liberalism and Christian
  Ethics, Cambridge University Press, 1998
• Grodzins-Gold, Ann 2001, Research Ethics from
  the Cultural Anthropologists Point of View
  Report for Collaborative Initiative for Research
  Ethics in Environmental Health (www.researchethics
  .org)

71
References (contd)

• Meara, Naomi, Lyle Schmidt, Jeanne Day, 1996.
  Principles and Virtues Foundation for Ethical
  Decisions, Policies and Character, The
  Counseling Psychologist, Vol. 24, No.1, pp4-77.
  January
• Quigley, Dianne 2006, A Review of Ethical
  Improvements to Environmental/Public Health
  Research Case Examples from Native Communities,
  upcoming Journal of Health Education, MI
• Wyschongrod, Edith Saints and Post-Modernism,
  University of Chicago Press 1990