Paper Three: Relational Ethics and Research with Vulnerable Populations
Researchers applying the scientific method to describe,
explain, and enhance the status of individuals with physical,
psychological, and social vulnerabilities are encountering
ethical dilemmas to which current federal regulations offer
incomplete answers. In such work, scientific and ethical
duties often appear to have mutually exclusive goals. Whereas
scientific responsibility involves a search for truth through
experimental controls, ethical duties are directed toward
protecting participant welfare through means that often seem
to jeopardize such controls (Fisher, 1993).When the goals of
science and ethics appear to conflict, investigators studying
vulnerable populations draw upon their own moral compass, the
advice of colleagues, and recommendations of institutional
review boards (IRBs) to make decisions about ethical
procedures that have immediate and possibly long-term impact
on participants, their families, and the communities they
represent.
Since 1974, the federal government, through regulations
requiring the establishment of the institutional review board
(IRB) system, has formally recognized the inadequacy of
ethical procedures which rely solely on the professional
judgment of individual scientists (Benson and Roth, 1988).
However, ethical evaluations drawn from the consensus of IRB
members can also represent a restricted moral view. IRBs
typically include ethicists, academic scholars,
practitioners, and scientists who judge the ethicality of a
research proposal through the application of federal and
professional guidelines, abstract moral principles, and
values situated within the cultures of academia,
institutionalized medicine, or science. The perspectives of
those who participate in research are typically given only
superficial consideration through the appointment of a
community member who cannot realistically represent
perspectives of the diverse individuals who will be called
upon to participate in various research projects conducted by
members of the institution. Children and adolescents at
psychosocial or physical risk, individuals from diverse
economic and cultural backgrounds, and adults with cognitive
deficits react differently to controlled procedures, and
their perspectives and the perspectives of their family
members can differ from those of well-meaning IRB decision
makers.
Public reactions to past and recent revelations concerning
the government-sponsored Tuskegee Syphilis Study (Jones,
1993), the human radiation experiments (ACHR, 1996), and the
NIMH Violence Initiative (Leavy, 1992) have lead to concerns
that current federal guidelines do not adequately protect the
interests of our most vulnerable citizens and that diminished
public trust in human subjects research may jeopardize
research participation. In response to public concern, the
President has appointed the National Bioethics Advisory
Commission to review the adequacy of current federal
guidelines for the protection of human subjects. This paper
argues that to insure such protections are adequate, revised
research regulations need to reflect a relational approach
that encourages moral discourse between scientists and
participants as an essential means of constructing the best
scientific and ethical procedures possible within each unique
research context.
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Philosophical
Premises Guiding Ethics-in-Science Decision Making
Consequential and Deontic Frameworks
Since the Nuremberg Code (1946), federal regulations
(DHHS, 1991) and professional guidelines for research (e.g.,
American Psychological Association [APA], 1992), have
primarily drawn upon the utilitarian or consequential
meta-ethical position (Beauchamp, Faden, Wallace, and
Walters, 1982) to solve ethical problems when actions that
would protect the rights and welfare of research participants
threaten the internal validity of an experiment. According to
utilitarianism, the morally right action is the one that
produces the most pleasing consequences (Mill, 1861/1957).
Applied to ethics-in-science decision making, when a conflict
between scientific rigor and participant welfare arises, the
investigator's obligation to a small group of research
participants may be superseded by her or his responsibility
to produce reliable data that can potentially provide future
benefits to members of society at large or to the
participants' particular social group. Utilitarianism thus
encourages a value structure in which potential benefits of
science to society can receive higher moral priority than
concrete and measurable risks to research participants.
Although consequentialism does not rule out consideration
of participant values about, and idiosyncratic sensitivity
to, specific types of harm and benefit, in practice those
adopting this framework conceptualize risk and benefit as
tangible entities with universal value subject to rational
analyses by those other than the participant. Utilitarianism
can thus promote an ethical orientation in which an abstract
risk/benefit calculus guides moral action independent of the
particular values and priorities a subject might place on the
specific risks and benefits under consideration.
Equally important in philosophical circles, but less
pervasive in ethics-in-science decision making, is the
deontological approach in which the moral rightness of an
action is evaluated without regard to the consequences and is
carried out only if one would will that that action should be
universal law (Kant, 1785/1958; Levine, 1986). Following
deontic moral premises, an investigator would never treat a
participant simply as a means to advance scientific knowledge
and would only select research procedures she or he could
apply across all research contexts. The Kantian tradition's
inherent respect for the dignity of persons would appear to
encourage scientists to incorporate participant perspectives
into their ethical decision making. In practice, however, its
focus on the universality of moral principles, and its
indifference to particular relations and particular persons
(Carroll, Schneider, and Wesley, 1985; Williams, 1981), often
leads investigators and IRBs to believe they can determine
which research procedures are ethical without consulting
members of the population under study.
Although both utilitarianism and deontology are important
philosophical resources for ethics-in-science decisions,
applied in isolation from a participant's own understanding
of the research context, these moral frameworks have the
potential to minimize a scientist's special relationship, and
subsequent moral obligations, to individual research
participants, fostering a psychological distance between
scientist and subject (Fisher, 1994).
A Relational Ethic Derived from a Justice-Care
Perspective
Moral arguments for the duty to consider participant
perspectives in ethics-in-science decision making derive from
a synthesis of principle-based justice ethics and
relational-based care ethics. The justice perspective
emphasizes moral agency based upon principles of mutual
respect, beneficence, and fairness (Kohlberg, 1984). It
stresses impartiality and distance from both the scientist's
own interests and her or his connectedness to participants.
The ethics of care emphasizes the duty to interact with
research participants on their own terms in response to their
needs (Gilligan, 1982). It stresses attention to the
interpersonal situation and a narrative of relationships that
extends over time.
In recent years there has been growing recognition in
philosophical and scientific circles that morality based on
justice can and does coexist with morality based on
interpersonal obligations (Baier, 1988; Dillon, 1992;
Higgins, 1989; Killen, 1996; Waithe, 1989). For example,
efforts have been made to integrate the two perspectives into
a single moral orientation toward individual identity. Those
advancing the justice perspective have traditionally taken
individual identity as fundamental, viewed care as a choice,
focused deliberations on how one can fulfill obligations to
others without violating their autonomy, and emphasized the
development of moral injunctions to protect identity. In
contrast, those advancing the care perspective have
traditionally taken relationships as fundamental, viewed care
as an obligation, focused on how one can achieve individual
freedom without violating moral obligations to others, and
stressed the construction of moral injunctions to protect
relationships (Clement, 1996). By integrating the two
philosophical orientations, a justice-care position
assumes:
- individuality is a product of ongoing interactions
between a person and her or his social environment
- respect for individuality need not threaten a sense of
community
- one cannot care for others without recognizing and
being responsive to their individuality.
Research Vulnerability as a Relational Construct
A justice-care orientation conceptualizes vulnerability as
a relational construct. Research vulnerability is defined in
terms of a susceptibility to harm that does not rest solely
upon the physical, psychological, or social characteristics
that society views as disadvantageous, but upon the degree to
which an individual's welfare is dependent upon the specific
actions of scientists within a specific experimental context.
In relational ethics, the obligation to protect the
vulnerable also resides within the context of dependency and
not in the charitable inclinations of the moral agent
(Goodin, 1985). From this perspective both the specific
susceptibility to research risks and the specific ability of
scientists to help alleviate these risks defines an
obligation that is not voluntary but morally binding (Goodin,
1985).
When an individual labeled by society as vulnerable is the
focus of scientific inquiry, the investigator must consider
the special life contexts that render this person more or
less susceptible to the harms associated with recruitment
procedures and participatory requirements for each particular
experimental design. For example, susceptibility to coercion
and exploitation may be a particular risk for those whose
age, mental status, or sociopolitical standing have limited
their experience in making independent choices or for whom
acquiescence to authority has been a means of survival. It is
not unusual for individuals with mental retardation to assume
permission from a nondisabled guardian is required when they
seek or are offered treatment (Ficker-Terrill and Rowitz,
1991; Ellis, 1992). For these persons, recruitment and
consent procedures drawing upon institutional authority or
the influence of legal guardians may increase their
vulnerability to undue persuasion and involuntary
participation. On the other hand, relationships between
vulnerable persons and their family members, practitioners,
or community leaders may be a positive life feature that
investigators can draw upon to reduce susceptibility to
research risk.
A relational concept of vulnerability also implies harm is
not predetermined. From this perspective, protecting the
vulnerable entails reducing if not eliminating the
probability of threatened harms (Goodin, 1985). As a
consequence, morally responsible scientists must take actions
which go beyond simply protecting cognitively impaired
persons from established risks associated with research
participation. They must be willing to reconfigure
experimental procedures to reduce or eliminate research
vulnerability. This may include re-conceptualizing
traditional assumptions regarding the standards by which an
individual is considered competent to give informed consent
and the role of guardians in consent decisions. It may also
include new ethical responsibilities, including an obligation
to educate prospective participants about concepts associated
with the conduct of human subjects research and to inform
them of the value orientations driving the research. From a
relational perspective, the investigator sees such efforts
not in terms of paternalism (Goodin, 1985), but as
contextually defined obligations of the research
contract.
Principles, Consequences, Community, and Care
A justice-care perspective accepts respect, beneficence,
justice, and integrity as fundamental ethical principles that
guide the moral actions of scientists. The translation of
these principles into moral actions is not, however, assumed
to be achieved simply through a scientist's moral
reflections, but must derive from expressions of mutual
accommodation among scientist, participant, and caring others
integrated into concrete practices (Ricoeur, 1990;
Widershoven and Smits, 1996). In addition, connectedness
with, and caring for, those who participate in research need
to be viewed as moral ends in their own right, rather than
simply as a means to facilitate recruitment or maintain
participant cooperation.
While accepting the deontic principle that research
participants should not simply be used as a means to
achieving research goals, relational ethics conceives
personhood and autonomy as social constructions which can
best be respected through mutual understanding and dialogue
between scientist and subject. Respecting research
participants thus involves responding to them on the basis of
their own self-conceptions. A justice-care perspective
proposes such ethical principles as beneficence, respect, and
justice can and should guide research design and
ethics-in-science practices, but that the investigator's
interpretation of these principles should not be prioritized
over the moral perspectives of participants and their
families.
A justice-care perspective includes an evaluation of the
moral rightness of ethics-in-science decisions in terms of
consequences. However, relational ethics also draws attention
to contextual factors that may influence how a specific moral
goal may be achieved and perceived. Such factors include the
recognition that scientists and participants may differ in
their understanding of the rightness of the consequences of a
particular form of scientific inquiry. A relational approach
to ethical decision making also rejects sole reliance on a
rational calculation of risk to benefits, recognizing that
scientists and prospective research participants may differ
in how they evaluate particular harms and goods, and whether
or not they view the weighing of costs and benefits itself as
a morally right action.
Ethical relationalism is not ethical relativism.
An emphasis on the contextual nature of ethical judgments
based upon scientist-participant dialogue is not meant to
imply an ethical relativism. Relational ethics does not
assume basic foundational moral principles can be derived
from group consensus. It sees embeddedness within a moral
community composed of scientists, participants, and their
families as an essential starting point but not an end point
in the search for the good (Mac-Intyre, 1984). Thus, the
exchange of views between scientist and participant is aimed
at illuminating rather than eliminating the moral values of
each and creating a research enterprise that can accommodate
rather than subjugate these values. As discussed more fully
below, participant perspectives must inform but not dictate a
scientist's moral judgments. Similarly, the value
orientations of scientists can not be perceived to outweigh
those who will be the focus of scientific inquiry.When
applying a relational ethic, an investigator must be prepared
to abandon a research project if its implementation
compromises or usurps scientific, participant, or community
values.
Relations between partners, not strangers
Relational ethics draws upon features of communitarianism
(Rawls, 1971). It promotes reliance on compassionate and
reciprocal empathy for the feelings of others and encourages
scientists and prospective participants to uphold the common
good rather than individualistic notions of the good life
(Prilleltensky, 1997; Sugden, 1993). Rawls (1971) proposes
that just actions in a society composed of members with
different levels of resources and power can be guided by
imagining oneself in an "original position" behind a veil of
ignorance that would conceal one's actual social status.
However, as Toulman (1981) points out, a system of justice
based upon imagining a veil of ignorance may well be fair,
but will also be an ethics for relations between strangers.
In relational ethics, such imaginings, if based solely upon
rational and abstract reasoning abilities, are seen to result
in false perceptions irretrievably embedded in the rational
scientist's own subjectivity. At its very core, relationalism
assumes that the ability to understand the perspective of
individuals who differ in life experiences, world views,
needs, power, social status, culture, and material and
personal resources requires a process of bidirectional
teaching and learning. This dialectic is operationalized in
investigator-participant co-learning procedures wherein the
moral perspective of prospective participants is viewed as an
essential element of ethics-in-science decision making.
Relationalism and Participant Perspectives
A relational ethic based upon a justice-care perspective
(Farr and Seaver, 1974; Sullivan and Dieker, 1973; Veatch,
1987; Wilson and Donnerstein, 1976), supports several moral
arguments for including the views of prospective research
participants, their families, and their communities in
ethics-in-science decision making (Fisher and Fyrberg, 1994;
Hillerbrand, 1987; LaFromboise and Foster, 1989; Ponterotto
and Casas, 1990). First, formulating regulations and ethical
judgments solely on the bases of opinions expressed by
experts in the scholarly community and IRB members risks
treating subjects as "research material" rather than as moral
agents with the right to judge the ethicality of
investigative procedures in which they participate. Second,
failure to consider prospective participants' points of view
encourages singular reliance on scientific inference or
professional logic that can lead to research procedures
causing significant participant distress. The University of
California IRB approval of consent procedures that failed to
disclose the full nature of experimental risk involving
medication withdrawal from participants with recent-onset
schizophrenia (OPRR, 1994) is an unfortunate example of what
happens when ethics-in-science decisions are not based upon
honest and open dialogue among scientists, prospective
participants, and families.
Third, failure to draw upon participant perspectives can
also lead to the rejection of potentially worthwhile
scientific procedures that participants and their families
would perceive as benign and/or worthwhile. For example, in
the every day practice of science, investigators often find
that guidelines designed to protect vulnerable children from
experimental psychopharmacological treatments inadvertently
create institutional obstacles that limit participants'
autonomy and access to research protocols that may advance
scientific understanding and treatment of their disorders
(Jensen, Hoagwood, and Fisher, 1996). Fourth, consistent with
the community consultation model advanced by ethicists and
investigators concerned with ethical practices and policies
for clinical research on HIV/AIDS and other life threatening
and potentially socially stigmatizing disorders, engaging
prospective participants' partners in the design and
implementation of research:
- assures adequate consideration of the ethical values of
beneficence, respect, and justice
- increases the probability of community support and
cooperation (Levine, Neveloff Dubler, and Levine, 1991;
Melton, Levine, Koocher, Rosenthal, and Thompson,
1988).
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Relational
Ethics and Co-Learning
For the past two decades, ethical decisions regarding
research with human subjects have been guided by the three
fundamental principles set forth by the Belmont Report (DHEW,
1978): respect for persons, beneficence, and justice.
Although few dispute the importance of these principles,
there is no consensus on how to prioritize one's obligations
when specific ethical problems place the principles in
conflict. From a relational standpoint, achieving such
consensus might actually decrease the adequacy of moral
procedures. Consensus among IRBs, bioethicists, and
investigators risks promoting universal application of a
presumed hierarchy of values across contexts differing in
their moral requirements that would reflect the values of the
scientific and scholarly communities without consideration of
participant values. Co-learning approaches can help situate
decisions surrounding conflicting ethical principles within
specific research contexts and the perspectives of the
specific population considered for investigation.
A major assumption of relational ethics is that
co-learning enhances the moral development of scientists and
participants through a better understanding of the reciprocal
relationship between the participant's expectations and the
researcher's obligations. Relational ethics views scientist
and participant alike as moral agents joined in partnership
to construct research goals and procedures that produce
knowledge carrying social value and scientific validity. In
viewing autonomy as a social construction, it proposes that
respect for personhood must be rooted in
scientist-participant dialogues aimed at discovering shared
and unshared values in a process of mutual influencing
through which fair and caring ethical procedures are
derived.
Teaching and Learning
A relational ethic seeks to develop methods of
ethics-in-science decision making sensitive to both the
justice-based dimension of equality and inequality and the
care-based dimension of attachment and detachment (Clement,
1996). It assumes both scientist and participant come to the
research enterprise as experts: The researcher brings
expertise about the scientific method and extant empirical
knowledge base and the prospective participant brings
expertise about the fears, hopes, and wishes the community
brings towards the prospect of research.
A cornerstone of relational ethics is that the roles of
teacher and student are assumed by both investigator and
participant throughout the process of exchanging views. For
example, to begin a dialogue by asking prospective
participants open-ended questions concerning research ethics
is sometimes problematic since it asks individuals to provide
spontaneous and decontextualized responses to moral questions
which require informed deliberation on issues of scientific
concern that most participants have not previously
considered. Investigators can use colearning procedures to
share with prospective participants their views on how and
why it is important to apply the scientific method to examine
questions of societal import and to debates underlying areas
of current ethical concern. In turn, the prospective
participants, their families, or community representatives
can apply their moral perspectives to critique the scientific
and social value of a proposed study and share with
investigators the value orientations guiding their reactions
to the planned procedures.
Through the uncovering of common and unshared dimensions
of ethical attitudes toward the integrity of scientific
research, co-learning joins scientist, prospective
participants, and community members in partnership to
discover previously unidentified areas of moral concern and
to construct a scientific enterprise based upon mutual
respect, accommodation, and trust. Researchers employing
co-learning welcome differing points of views as checks
against the risk of confusing scientific self-interest with
social beneficence. They forge ongoing partnerships with
prospective participants, gaining community input at the
design, implementation, interpretation, and dissemination
stages of research (Higgins-D'Alessandro, Fisher, and
Hamilton, 1998).
Debriefing as Part of the Ongoing Process of
Co-Learning
A foundational assumption of relational ethics is that
co-learning is an ongoing process involving scientist and
community members in moral discourse throughout each step of
human subjects research including: the research design,
informed consent, project implementation, data
interpretation, and knowledge dissemination phases. It
therefore requires greater attention to debriefing
procedures, an ethics-in-science practice that has received
scant attention outside of ethical discourse on deceptive
research practices. Debriefing has been viewed traditionally
as a unidirectional activity that allows the scientist to
correct any misconception or supply information, purposely
withheld, in a sensitive and educational manner so that the
participant can understand and accept the reasons offered,
and be satisfied with the experience (Keith-Spiegel and
Koocher, 1985). As a consequence, in practice, especially in
non-treatment research, debriefing is typically conducted in
a cursory fashion, void of an exchange of views, sometimes
consisting simply of a promise (often unfulfilled) to send
participants a summary of the findings when the research is
completed.
From a relational standpoint, debriefing is a critical
phase during which the congruence between the participant's
expectations and the scientist's obligations, presumably
obtained during informed consent, can truly be assessed
(Scott-Jones and Rosnow, in press). Debriefing thus needs to
be constructed as a bi-directional activity in which
investigator and participant openly share their views on: (a)
the nature of and reaction to the research experience; (b)
the adequacy of information provided during informed consent;
and (c) the scientific validity and social value of the data
collected. From this exchange, participants become more
educated critics and consumers of scientific knowledge and
investigators become more educated about participant
perspectives that can improve future ethical procedures,
research design, and interpretation and communication of
research results.
Confidentiality in Research with Vulnerable Populations:
A Case Example of Co-Learning
The principle of respect has generated numerous ethical
guidelines for protecting participant privacy through the
maintenance of confidentiality. Intricate procedures have
been developed for keeping data sheets free of identifying
information and for keeping records secure. Maintaining
confidentiality presents few ethical challenges when science
is characterized by laboratory studies devoid of information
about individual differences or when individuals with
previously identified disorders are the focus of study. The
ethical obligations are more complex when scientists study
the probability of impairment in populations judged to be at
risk for disorders or health-compromising behaviors. Such
studies have the potential to tap previously unidentified
sources of psychopathology, developmental delay, cognitive
deficits, abuse, addictions, criminal activities, and other
socially stigmatizing characteristics and behaviors (Fisher,
1993, 1994; Fisher and Rosendahl, 1990).
Does an investigator have a moral duty to help a research
participant if a previously unidentified problem is revealed
during the course of research? Does this moral obligation
override the duty to protect participant confidentiality? The
scientific community has traditionally been reluctant to act
upon information about individuals uncovered during the
course of nonintervention research out of a healthy
skepticism that inferences drawn from tests designed to
evaluate differences between groups of individuals may not
have diagnostic validity when applied to a particular
research participant (Fisher and Brennan, 1992). A second
source of reluctance is scientists' awareness that sharing
information with someone who can help the research
participant can sometimes create stressful or harmful
consequences for the participant, especially if such
individuals react to information with punitive measures
(Fisher, 1993).
A third element of caution against acting when
researchderived information indicates that participants are
in jeopardy is rooted in the scientist-citizen dilemma
(Veatch, 1987). Acting to help a research participant may
threaten the internal validity of an experiment (especially
in longitudinal designs) or jeopardize the trust and
participation of others involved in the research (Fisher and
Brennan, 1992; Fisher, Higgins, et al., 1996; Fisher,
Hoagwood, and Jensen, 1996). Applying the rule-utilitarian
framework, when a conflict emerges between participant
welfare and scientific rigor, investigators have often valued
the production of well-controlled data that can benefit
society over their duty to facilitate or procure services for
individual participants.
Adolescent Perspectives on Risk and Confidentiality
The study of risk in adolescent populations highlights
ethical issues surrounding confidentiality, both because of
the potential dangers the risks pose to each particular
teenager's well being and because of this age group's
ambiguous status with respect to decisional capacities
(Holder, 1981; Koocher and Keith-Spiegel, 1990; Melton,
Koocher, and Saks, 1993). Research on risk-related
characteristics or behavior can reveal a particular
adolescent participant may have: suicidal ideation, is
engaging in health compromising behaviors, is involved in
illegal and/or harmful behaviors, or is living in abusive
circumstances. An implicit assumption underlying the failure
to assist adolescents who indicate potential problems during
the course of risk research is that teenagers value autonomy
and would feel betrayed by an experimenter disclosing
confidential information to protect them. Blind faith in this
assumption has prevented scientists from asking two critical
questions: What moral role does an adolescent research
participant expect of an investigator and what are the
consequences of failing to fulfill this role?
Applying a co-learning procedure,my colleagues and I
(Fisher, Higgins, et al., 1996) asked these questions of high
school students living in a low-income urban environment.
Students (who self-identified as predominantly Hispanic) were
provided with a brief overview of the scientific method and
scientists' concerns regarding confidentiality. They were
then asked to give opinions concerning different ethical
strategies an investigator could follow if during the course
of research an adolescent participant indicated she or he was
in danger or engaged in high-risk behaviors. The investigator
could: (1) keep the information confidential and take no
action; (2) talk to the teenager and assist her or him in
finding a referral source; or (3) tell a parent or another
concerned adult. To avoid imposing our own evaluations of
risk severity, we asked the adolescents to rate their
perceptions of how problematic they considered the following:
use of alcohol, illegal drugs, and cigarettes; physical and
sexual abuse; suicidal ideation; sexually transmitted
diseases; truancy; vandalism; theft; violence; and
shyness.
Influencing the Lives We Examine
"Those of us who study lives are aware that we influence
the lives we examine-perhaps very little, perhaps a great
deal" (Josselson, 1996, p. 80).
Perhaps, not surprisingly, adolescents of all ages viewed
self-referrals most favorably. However, probably the most
important finding of this co-learning approach was that
teenagers often viewed the maintenance of confidentiality
negatively, especially in situations in which an investigator
learns that a research participant is a victim of, or engaged
in, behaviors adolescents themselves perceive as problematic.
Students' responses thus indicated that they saw the
investigator as having a moral role in relationship to their
problems. The advocacy role that teenagers assumed was a
scientist's obligation was thus in direct contradiction to
the role of impartial observer assumed by the majority of
investigators currently conducting adolescent risk
research.
A process of co-learning can illuminate the impact of both
action and inaction on the life trajectories of those
studied. The responses of adolescents alerted us to the
disconcerting probability that even when teenagers have been
promised confidentiality under traditional informed consent
procedures, they nonetheless expect to be helped when they
tell an adult interviewer they are a victim of violence or
involved in high-risk behaviors. An investigator's failure to
help a teenager may have an iatrogenic effect on how the
teenager conceptualizes her or his own behaviors and the
fiduciary responsibility of adults. Adolescents may interpret
the scientist's lack of action as an indication that their
problem is unimportant, appropriate services are unavailable,
or that knowledgeable adults can not be depended upon to help
children in need (Fisher, 1993, 1994; Fisher, Higgins, et
al., 1996). Thus, the preservation of confidentiality in
adolescent risk research in particular and research with
other vulnerable populations in general, assumed by many
scientists to be a moral good, may in some cases actually
result in harm.
Avoiding the Fallacy of "Is to Ought"
In working with vulnerable populations, ethics-in-science
decisions must reflect a balance between the need for
communion between scientist and participant and the
obligation of individual moral agency. Relational ethic's
emphasis on autonomous mutual accommodation guards against
the temptation to use the co-learning process to follow the
fallacy of "is to ought" (Sidgwick, 1902). The fiduciary
nature of the scientist-participant relationship obliges the
investigator to take ultimate responsibility for decisions
that impact the rights and welfare of research participants.
Accordingly, prospective participant perspectives must
inform, but not dictate, the scientist's ethical decisions
(Fisher and Fyrberg, 1994). In developing ethical procedures
for human subjects research, scientists must assume the
responsibility to apprehend and respect the views of research
participants without relinquishing their obligation to apply
their own knowledge, training, and values to the pursuit of
the moral act.
For example, although they rated sexually transmitted
diseases (STDs) as a serious problem, most teenagers we
interviewed did not believe an investigator should report
STDs to concerned adults. While providing teenagers with a
referral to a health clinic may respect their autonomy, given
the lifethreatening nature of some of these diseases, an
investigator has to evaluate teenagers' preferences against
the ability of those in this age group to understand the
personal implications of the disease, adolescents' ability to
obtain appropriate assistance in this circumstance, and the
risk to their health if they do not follow through on the
referral and the problem remains unreported.
Constructing ethical procedures based upon mutual
accommodation. How does a relational ethic address conflicts
between the principles of respect and beneficence? Instead of
simply complying with or overriding the adolescents'
preferences, a relational-based approach calls for the
development of ethical procedures that can accommodate (a)
the scientist's fiduciary responsibility to protect
participant autonomy and welfare and produce reliable
information according to accepted principles of research
practice; (b) the adolescents' expectations for
confidentiality and concern; and (c ) the participants' and
guardians' right to know the exact nature of the
investigator's confidentiality and reporting policy.
In this specific situation, an understanding of adolescent
and guardian expectations, combined with a recognition of the
investigator's fiduciary responsibility, leads to the
following guidelines for confidentiality and disclosure
procedures in adolescent risk research:
- Prior to initiating a study, the investigator should
determine the adequacy of school and community services for
the risk behaviors and disorders under investigation, the
general ability of prospective participants at different
stages of adolescence to utilize and benefit from these
services with or without parental involvement, and the
extent to which different reporting options conducive to
the participants' ability to use existing services sustains
or impairs the scientific validity of research
procedures.
- The investigator then engages a small sample of
prospective participants and their guardians in discussion
regarding the available reporting options or draws upon
previously acquired information on adolescent and guardian
perspectives.
- Based upon this information, the investigator selects
the reporting and referral procedures that meet the
adolescents' and guardians' expectations of the scientist's
role responsibilities, serve the teenage participants'
autonomy and welfare, and preserve the scientific integrity
of the study.
- During the recruitment phase of the study, both
guardians and adolescents are informed about the specific
confidentiality, referral, or reporting procedures to be
implemented. This insures that either can decline to give
their permission/assent for participation based on full
knowledge of how the investigator will respond to risk
information derived during the course of research.
- In addition, in recognizing that many adolescents
assume that scientists have a moral obligation to assist
participants who are at developmental risk, irrespective of
the confidentiality or reporting procedures selected for
the study, a list of neighborhood agencies specializing in
the problems under investigation is provided to all those
contacted, regardless of whether or not they choose to
participate in the study.
- If during the course of the study, an adolescent
participant meets conditions for referral or reporting, the
course of action outlined during the consent procedures are
reviewed with the teenager, and then implemented.
- At the completion of the study, participants are asked
to evaluate the adequacy of the ethical procedures and
guardians and participants are provided with a general
summary of the scientific and ethical aspects of the study.
These last steps allow for continued mutual evaluation and
potential adjustment of future procedures.
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Questioning
Value Assumptions and Striving for Common Conceptions of the
Good
In the construction of its professional authority, the
science establishment has endorsed a set of ethical codes to
police itself and allow others to police its members. These
standards can be said to largely reflect Eurocentric,
rational-deductive, libertarian conceptions of the good
(Prilleltensky, 1997) which, preserved in federal regulations
and professional codes, become moral premises not amenable to
challenge. The establishment's definition of the good is
embodied in assumptions guiding scientific conduct
(Beauchamp, et al., 1992; Freedman, 1975; Rosenwald, 1996;
Veatch, 1987), among them:
- knowledge gathering is a fundamental and unconditional
good
- knowledge generated by the scientific method is and
should be value free
- scientists are entitled to use humans as material for
their pursuits
- respect, beneficence, and justice are guiding moral
principles for ethical decision making in human subjects
research
- cost-benefit analysis is an acceptable basis for
deciding how to prioritize these moral principles and for
guiding ethical decision making
- informed consent is the primary means of ensuring
participants are not victims of an imbalance in favor of
greater risks than benefits
- the right to make autonomous decisions regarding
research participation is dependent upon the ability to
weigh the risks and benefits of the experimental
procedures
- principles of beneficence and justice can be
subordinated to the principle of autonomy reflected in
informed consent policies
- the absence of harm justifies the absence of benefits
if it leads to scientifically valid information
- science-in-ethics decision making is the province of
those with professional authority, be it scientists,
bioethicists, IRB members, or policy makers.
Relational ethics poses several interrelated questions
about these traditional value premises: Do the values
embodied in current professional codes and federal
regulations reflect the moral visions of those asked to
participate in research? Do scientists and participant groups
have different conceptions of the good life and therefore
different evaluations of the ethical procedures aimed at
producing knowledge to achieve the good? Do standards of
competency for consent to research decisions place an unjust
burden on those with identified mental impairments? Would
some individuals who consent to research participation on the
basis of information describing the immediate purpose and
nature of a study, decline to consent if they knew the value
orientations driving the scientific and ethical procedures?
Should scientists be required to communicate their conception
of the good and have their values exposed to participant
evaluation? These questions take on ethical urgency when
applied to research with persons with cognitive deficits,
individuals not old enough to have the legal right to consent
to research, and members of historically oppressed
populations.
Advocates for those who because of age or impairment have
traditionally been denied the right to consent to research,
have begun to challenge traditional standards for judging the
moral agency of those legally defined as incapable of
consent. For example, with the advent of
de-institutionalization and the principle of normalization
into human services (Lindsey and Luckasson, 1991;
Wolfensberger, 1972), regulations for Intermediate Care
Facilities (Conditions of Participation, 1988) and recent
court decisions guaranteeing the right of persons with mental
retardation to make their own treatment decisions (Rennie v.
Klein, 1982; Rogers v. Okin, 1982), a diagnosis of mental
retardation is no longer accepted as a presumption of
incompetence to consent to or refuse treatment (Dinnerstein,
1994). Similarly, state laws have increasingly granted
adolescents the right to make decisions concerning treatment
for venereal disease, drug abuse, or emotional disorders
without guardian permission (Fisher, Hatashika-Wong, and
Isman, 1999; Holder, 1981). However, federal guidelines
regulating the rights of these individuals in research have
been vague in the case of teenagers, and not formally
articulated in the case of individuals with cognitive
deficits (Fisher, Hoagwood, and Jensen, 1996; Bonnie, 1997).
In the absence of clear guidelines, individuals who have not
reached the age of legal maturity, or who because of
disability do not have the legal right to make autonomous
decisions, have lost their claims to the moral authority to
make decisions about research participation.
Advocates for the rights of historically oppressed groups
are increasingly drawing attention to the possibility that
established Eurocentric views of science may not be
universal. Some argue that the value placed on the control
and manipulation of variables may reflect a materialistic,
individualistic, power dynamic inconsistent with the values
of spirit, collectivity, and harmony inherent in many ethnic
minority cultures (Greenfield, 1994; Marcus and Kitayama,
1991; Parham, 1993; Triandis, 1990). Ethnic minority scholars
are also espousing widely held minority community beliefs
that their members have been "raped" by white researchers who
engage in research without understanding or caring for those
they study, who use minority members as bargaining chips for
the receipt of large federal grants, and who treat them as
the "human equivalent of lab rats" (Mio and Iwamasa, 1993;
Parham, 1990; Ponterotto, 1993).
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Challenging
Scientistic Assumptions
Is All Knowledge Worth Pursuing?
Science has traditionally attached ethical significance to
methods but not topics (Rosenwald, 1996). This stance
reflects two assumptions inherent in a scientistic
philosophy: (a) the pursuit of knowledge is good regardless
of its social and ethical implications, and (b) consideration
for the practical consequences of research will inhibit
scientific progress and academic freedom (Scarr, 1988). From
this perspective, statements in the final paragraph of a
journal article stating the limited generalizability of one's
work to social application provide sufficient ethical safety
mechanisms and/or alleviate the investigator of further moral
responsibility against society's (mis)use of the products of
her or his work (Fisher, et al., 1997; Prilleltensky,
1997).
From a relational perspective, research is embedded in
valuational contexts that make it impossible to claim the
existence of value-free information (Prilleltensky, 1997).
Thus, a counterpoint to the scientistic view is that all
research is value-laden and sociopolitical in nature
(Kurtines, Azmitia, and Gewirtz, 1992). This is particularly
true when individuals with cognitive deficits and minority
group members are the focus of study (Sampson, 1993;
Zuckerman, 1990). In a society in which persons with
cognitive impairments see their rights diminished through
protectionist laws and members of historically oppressed
communities have their rights degraded through discriminatory
laws and practices, scientists must recognize that any
research on these and other politically vulnerable
communities can directly impact public attitudes and policies
directed toward research participants and the populations
they represent (Fisher, et al., 1997). That policy makers and
nonscientist citizens "are not likely to make the distinction
between scientific theory and what seems to be its political
implications, or between generalizations based on population
statistics and their applications to individual members of a
given group" (Zuckerman, 1990, p. 1301), argues for the
importance of integrating participant perspectives into
ethics-in-science decision making.
Group stigmatization.
One community concern receiving little attention in
ethics-in-science discourse is whether group stigmatization
should be considered in determining risks to participants.
Failure to give ethical attention to group depreciation as a
research risk is rooted in the scientific ethos which
considers research morally permissible if the risks of the
procedures are "reasonable" in relation to the benefits hoped
for (Beauchamp, et al., 1982). The "reasonableness" of risk
has typically been determined by members of the majority
establishment who, by definition of their intellectual, age,
or racial caste status, may overestimate the value of
research and underestimate the risks of community
stigmatization. According to Cassell (1982), if harm/benefit
cannot be accurately predicted it should not be applied. This
may be especially true for the ethical evaluation of research
on minority persons or those with diminished legal rights,
when they or their families do not have a voice in evaluating
the "reasonableness" of collective risks and benefits.
Many researchers have yet to recognize that racism and
other prejudices are not just abstract theoretical ideas, but
rather real conditions of discrimination and oppression in
the lives of ethnic minority individuals and those labeled as
having cognitive deficiencies (Sue, 1993). Accordingly,
failure to consider group stigmatization as a potential cost
of research participation may be asking politically
disadvantaged members of society to unjustly bear research
risks. A relational ethic calls for researchers adhering to
Eurocentric, scientistic philosophies to question their
individualistic and rational-deductive values and consider
the diverse world views held by members of ethnic minority
and cognitively vulnerable communities.
In moving from a "discourse of power of the majority" to a
new form of dialectics between investigators and communities
(Ponterotto and Casas, 1990; Ivey, 1987), the science
establishment must be prepared to ask questions that may
challenge foundational premises of scientism: Should
government and IRBs provide assurance of protection from
group stigmatization and personal harm to physically,
cognitively and politically vulnerable participants? Should
the risk of group stigmatization be communicated to
participants and their families during informed consent
procedures? Is collective stigmatization a moral
prohibition?
Re-evaluating the Ethical Significance of Research
Benefits
Secular scientific thinking holds an instrumental view of
reality. It values self-directed rational planning,
self-determination, and autonomy. The notion of the good is
constantly filtered through these values. In
ethics-in-science decision making, the scholarly community
grants moral priority to the ability to weigh the costs and
benefits of an experiment, but does not challenge whether a
society based upon such calculations is worthwhile. A
relational ethic emphasizes the importance of considering the
authenticity of the cost-benefit analysis to the moral lives
of prospective research participants. For example, might some
adults with mental retardation prefer to avoid unpleasant
side effects associated with experimental treatments for
behavioral disorders, rather than take the chance that their
behavioral problems might or might not be reduced by research
participation? Are some individuals from historically
oppressed populations unwilling to engage in any research
which may risk additional group stigmatization?
Questioning the moral value of the cost-benefit
analysis
The acceptance of the balance of risks and benefits as a
primary means of ethical justification implies that
beneficence, the moral obligation to protect the welfare of
research participants, does not take priority over other
moral values in ethical decisions for human subjects
research. Some have questioned whether efforts to ameliorate
potential harm to vulnerable populations is sufficient
ethical justification for human experimentation. In human
subjects research it is often considered morally sufficient
to conduct an experiment if the participants are in no worse
condition at the end than they were at the beginning of a
study. This emphasis on the principle of nonmaleficence - to
do no harm - has lead to the acceptance of an "ethical
minimalism" (Rosenwald, 1996) in which research participants
are rarely direct beneficiaries of the knowledge they helped
produce. Such research is said to be valuable if it is
conducted according to accepted scientific standards of
reliability and control and assumed to have social value.
When conducting research with historically stigmatized
populations, investigators need to be sensitive to how
evaluations of social benefits are culturally determined and
pose the question: Within whose historical tradition is this
knowledge valued? (Bermant, 1982).
Justice in its narrower sense is understood to be what is
fair and equal, and the just person is the person who takes
only her or his proper share.When research offers no direct
benefits to a participant or her or his community, how do we
determine what is the scientist's proper share? Casas (1990)
criticizes current ethical guidelines for human subjects
research for their emphasis on avoidance of harm rather than
promotion of benefit to the community under investigation.
Casas argues that an emphasis on harm avoidance is an
insufficient ethical justification for conducting research on
vulnerable communities because it shifts the ethical burden
away from the investigator's obligation to demonstrate that
research will result in any good and towards the participant
who must demonstrate that they may be harmed. Casas' comments
raise the provocative possibility that the cost/benefit
calculus, a traditionally cherished means of evaluating
ethical actions, may not be an acceptable method of moral
analyses for individuals holding values outside the
Eurocentric and scientistic conceptions of the good.
Incentives for research participation.
The absence of participant input on the risks and benefits
of research inducements can also lead to unfair practices.
When applied to studies on impoverished, institutionalized,
or otherwise vulnerable populations, the decision to provide
inducements creates a tension between compensating
individuals fairly for their time and coercing them to assume
extraordinary burdens because they need the income (Levine,
1986). Unfortunately, little consensus exists about what
defines due and undue incentives for research participation
(Macklin, 1981).
participants and/or society
To determine a just exchange of research goods,
investigators can consult with prospective participants and
their advocates to determine the market value of the time,
skill, and effort required for participation within the
context of the nonmonetary goods they may receive from
research participation (e.g., individual or community
benefits of research-derived knowledge). Inducements based
upon this information can be set at levels sufficient to
attract the desirable number and diversity of research
participants (Levine, 1986). Such an approach reflects the
position that economic justice belongs to the domain of
obligation rather than charity (Goodin, 1985).
The Sociopolitical Nature of Ethnic Minority
Research
"Concepts of racial inferiority form what Horace Mann Bond
called "a crazy-quilt world of unreality" in a society that
proclaimed equality, opportunity, and democracy as goals
while it "brutalized, degraded, and dehumanized " African
Americans" by every instrument of the culture" (Tyack,
1995, p. 6).
Racism in American society has a long history marked by
social and political constructions of differences governed by
the political and social interests of the ruling racial caste
(Miles, 1989). Race-based research can and has been used to
justify segregation, political subordination, and hostile and
demeaning stereotypes (Laosa, 1984; Tyack, 1995). To many
members of racial and ethnic minority groups, federally
funded research represents another arm of a powerful racial
caste system.
Although the recent federal regulation that requires
justification for failing to include women and minorities in
research is laudable (DHHS, 1994), this policy does not
address, and may even perpetuate, the questionable scientific
validity and ethicality of classifying humans into different
"races" and the practices of power and subordination that
such classifications represent in the United States (Tyack,
1995). In contemporary science, terms such as "race" and
"ethnicity" are used categorically with little scientific
basis outside of historical folk beliefs based upon
pre-colonial era thinking about the inherent superiority and
inferiority of populations along genetic lines (Chan and
Hune, 1995; Essed, 1991; Fisher, et al., 1997; Stanfield,
1991). Use of racial labels to categorize research
participants enables investigators to leave monolithic racial
stereotypes unquestioned and avoid examining the personal
significance of these terms for research participants,
scientists, and members of society (Cocking, 1994; Fisher, et
al., 1997; Oboler, 1995; Ogbu, 1994; Stanfield, 1993).
Socially constructed racial labels can strip participants of
their personal identity by studying them only in terms of
racial or ethnic categorizations (Heath, 1993). In their rush
to label ethnic minority participants, researchers apply
categories that may not reflect how individuals see
themselves.
Funding for research on ethnic minority populations is
often driven by economic and political concerns (e.g., urban
crime, welfare dependency) framed within the cultural lens of
nonminority political leaders. Research designed to address
minority "problems" may be viewed very differently by white
researchers and the minority communities they wish to study.
Desegregation policies (Tyack, 1995), the Bell Curve debate
and associated IQ-based tracking movements in American
education (Herrnstein and Murray, 1997; Jensen, 1991; Laosa,
1984), the Tuskegee syphilis study and government radiation
experiments which misinformed research participants about
information directly relevant to their health (Jones, 1993;
ACHR, 1996), the NIH-initiated studies on the biological
bases of violence (Leavy, 1992), and the California
Adolescent Family Life Program's study of sexual abuse in
African-American and Latin-American adolescent mothers
(Fisher, et al., 1997) are examples of sociopolitically
driven experimentation on racial/ethnic minorities that have
undermined trust in scientists as guardians of ethical
treatment when prospective participants are minorities
(Fisher, et al., 1997).
Who Speaks for Ethnic Minority Communities?
Some minority scholars have expressed the view that white
researchers do not understand the sociopolitical nature of
research involving questions of oppression, discrimination,
prejudice, racism, and dominate-subordinate relations (Sue,
1993). They argue researchers seeking to study minority
communities, including investigators who are themselves
members of the ethnic group(s) to be studied, should
routinely seek advice of community leaders (J.F. Jackson,
M.H. Bennett, J. Dent, H. Fairchild, R. Jones, and P.
Rhymer-Todman, personal communication, January 21, 1993). In
response to these concerns, social scientists investigating
high-risk behaviors in ethnic minority youth have formed
community advisory task forces comprised of ethnic minority
scholars, practitioners, and community members charged with
assisting in the development of culture-fair research
procedures and adequate informed consent and debriefing
procedures (Fisher, Hoagwood, and Jensen, 1996).
Relational ethics requires investigators to guard against
another form of paternalism: The unwarranted assumption that
opinions of minority scholars and community leaders reflect
or override those of the less educated and more vulnerable
community members who may be the target of investigation. In
response to concerns regarding the controversial NIH Violence
Initiative (Wheeler, 1992), a panel of African- American
leaders was appointed to review the scientific adequacy and
potential for group stigmatization and harm that would result
from government-sponsored research on pharmacological
approaches to stemming the tide of urban violence. However,
absent from the dialogue was the voice of African-American
women and men living in impoverished ghetto communities,
whose sons, based on current statistics, have a devastatingly
high probability of entering the juvenile justice system
before they reach adulthood (Wordes, Bynum, and Corley,
1994).
Federal guidelines that encourage the inclusion of
guardians of prospective participants might have situated the
ethical issues raised by the government initiative within the
real-world concerns and needs of those who would be most
directly impacted. For example, how would these individuals
have weighed the risk of group stigmatization against the
chance that experimental treatment might help them protect
their sons from the sobering picture of adolescent risk
characterizing their communities? How might an understanding
about their fears, hopes, and dreams for their children have
influenced the research plans and goals supported by the
initiative? How might an honest dialogue between scientists
and the parents of prospective participants have shaped the
recruitment procedures, experimental design, and
dissemination plans in ways that might impact positively on
the reactions of those later recruited for participation in
the studies?
From a relational perspective, investigators conducting
multicultural research need to insure scientific and ethical
procedures are derived from dialogue among scientists,
community leaders, and representatives of the ethnic minority
individuals who will directly participate in the research.
Moreover, investigators need to insure discussions are
bidirectional, and that ethics-in-science decision making
derived from such discourse is based upon respect and mutual
accommodation, rather than compromise and coercion.
White Racial Identity and the Cultural Lens of Ethnic
Minority Research
From a relational perspective, a scientist's identity is
in part defined by the participants studied. When members of
ethnic minority groups are the focus of scientific inquiry,
investigators should approach all research projects with the
assumption that racial/ethnic bias is inherently present
(Atkinson, 1993). A relatively ignored basis of unintentional
racism is failure of white investigators to consider the
impact of their own racial identity on what research problems
they choose to examine and the research methodologies they
select (Ponterotto, 1993). According to Helms (1993), an
inherent and sometimes unconscious facet of white racial
identity is that white members of society are born the
benefactors and beneficiaries of racism. Their attempt to
deny, repress, or distort this fact can lead to research
supporting racist ideologies. From this perspective, racism
in research can only truly be overcome after white
researchers attempt to become aware of their role and status
in a racist society and work to develop non-racist
definitions of whiteness. In relational ethics, this goal can
only be achieved through honest, caring, and ongoing
engagement of minority members in dialogue on value
assumptions driving race-relevant research.
Research implications of Helms' stages of white racial
identity
Helms' model of white racial identity includes six stages
of increasingly complex racial conceptualizations. In the
first stage, "contact," a white researcher is considered
naïve to the sociopolitical implications of race in this
country and erroneously assumes that data from research on
predominantly white samples pertain to people of all races.
Researchers operating at this level may focus their
investigations on social characteristics such as income,
education, and employment status rather than factors
associated with minority status (e.g., discrimination) on the
unsupported assumption that racial group differences
disappear when ethnic groups are of similar demographic
backgrounds (Fisher, et al., 1997; Slonim-Nevo, 1992).
In Helms' second stage, "disintegration," an investigator
becomes aware of race-related moral dilemmas and becomes
ambivalent about the inclusion of racial/ethnic minorities in
research. This may lead to unrealistic expectations for
standards in research excellence applied only to minority
group investigations, resulting in a paucity of studies
directly relevant to the concerns of ethnic-minority
communities. For example, members of grant review panels
operating at this level may give lower priority scores to
research on newly immigrated, lower-income, Spanish-speaking
populations if the proposed study does not include comparison
groups defined by various combinations of individuals of
different immigration histories, income levels, and language
orientations. Such decisions can undermine research on ethnic
minorities when there is a lack of sufficient numbers of
individuals representing each of these groupings, when
individuals who meet certain group criteria are
non-representative of Spanish-speaking residents of the
United States, or when the rationale for inclusion is based
upon empirically unsupported assumptions that these factors
comprise independent influences on behavior.
In attempts to deal with the personal disorientation
emerging in the second stage, Helms describes a third level
of white racial identity development, "reintegration." In
this stage, white researchers may seek re-equilibration by
idealizing white culture as a standard for behavioral norms.
This can lead to the assumption that ethnic minority research
is only valuable when whites are used as a control group,
leading to comparative methodologies, which in turn result in
deficitoriented approaches to understanding ethnic-minority
behaviors and mental health issues (e.g., Banks, 1993;
Graham, 1992; McAdoo, 1993).
At Helms' next level, "pseudo-independence," white
researchers substitute the ethnocentrism of the earlier
stages for a liberalism that seeks to explain away
racial-group differences in terms of cultural disadvantage,
rather than looking equally at both minority and white
behaviors. This can lead to research supporting the
paternalistic view that ethnic minorities lack the ability or
fortitude to play a role in alleviating adverse conditions
impacting their lives (Parham and McDavis, 1987). Research
influenced by this level of white racial identity development
may also include assessments of acculturation (adaptation to
white social values) as an indicator of psychological
adjustment, when in fact some newly immigrated participants
may experience the transfer of culture as a source of
intrapsychic and intrafamilial stress (e.g., Cooper, 1994;
Gil, Vegas, and Dimas, 1994; Szapocznik and Kurtines, 1993),
and traditional values or a bicultural orientation may in
fact serve as buffers against psychological distress (Berry,
1980; Bettes, et al., 1990; LaFromboise, 1988). In the
absence of information about what elements of majority
culture are harmonious with the basic values and
characteristics of specific ethnic communities, white
researchers operating at this level of racial identity
development risk legitimizing social prejudices into
presumably value free "adaptive" and "maladaptive" categories
of racial behavior (Fisher, et al., 1997; Takanishi, 1994;
Tharp, 1994).
According to Helms, those scientists attaining the fifth
level of white racial identity, "immersion-emersion," attempt
to re-educate themselves and others by incorporating an
understanding of white culture and racist sociopolitical
history in studies on both minority and white behaviors. This
can include scientific attention to the impact of racial
discrimination in employment, housing, educational, and legal
institutions as factors influencing family socialization
patterns and physical and psychological well-being (Boykin
and Toms, 1985; Fisher, et al., 1997, Gaines and Reed, 1995;
Johnston, O'Malley, and Backman, 1993; Sue, 1991). Such
endeavors will fail to provide adequate explanation of
factors influencing ethnicminority well-being if they do not
incorporate the perceptions and understanding that minorities
have of their own social realities, including perspectives of
their immigration and life in the United States.
In Helms' final stage, "autonomy," white scientists,
willing to abandon the benefits racism has provided them,
recognize the implicit cultural assumptions in their work and
the need not to impose these assumptions on other racial
groups. From a relational perspective, researchers can not
develop a mature white racial identity without giving ethnic
minority members a voice in the scientific enterprise
designed to determine their identity and subjectivity
(Fisher, et al., 1997; Sampson, 1993). Incorporation of
ethnic minority perspectives in white researchers'
exploration of their own racial biases may challenge the
extent to which their world view and conception of the good
is sufficient or even appropriate for studying racially
diverse populations.
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Relational Ethics and Informed
Consent
Treating Adults with Cognitive Impairments as Members of
the Moral Community
The scholarly and legal establishments have traditionally
defined partners in the moral community as "rational" persons
with whom one can have a shared understanding about what
constitutes a moral action in a given situation. The
"rational person" orientation has elevated certain levels of
abstract thinking to standards by which moral agency is
judged. In the scientific community, adaptation of the
utilitarian philosophy has led to ascribing what might be
considered exultant status to the ability to weigh the costs
and benefits of research. For adults with cognitive
impairments who may not make decisions based upon rational
calculation, valuation of cost-benefit analysis as a standard
of moral agency can deprive them of liberty of action and
consensus making-considered to be the rights of
personhood.
The ability to rationally manipulate the costs and
benefits of research and arrive at a "reasonable" outcome of
choice is the most cognitively complex of several
psycho-legal standards of consent capacity (Appelbaum and
Roth, 1982). The ability to respond to requests to
participate in research can be also be evaluated at levels
requiring less abstract reasoning skills including: (1)
expressing a choice concerning participation; (2)
demonstrating a factual understanding of the risks, benefits,
and alternatives associated with a research project; or (3)
indicating the ability to appreciate the implications of the
above factors to one's own circumstance and the voluntary
nature of participation (Appelbaum and Roth, 1982).Holding
persons to a standard which requires the calculation of costs
and benefits poses legal and ethical problems because it is
difficult to demonstrate that a person's preference is
directly related to the rational she or he may give, and
rejection of an individual's rational can justify widespread
substitute decision making for those with cognitive
impairments (Roth, Meisel, and Lidz, 1977).
All persons with mental disabilities are unique
individuals. Those in the mild and moderate classifications
of mental retardation and those with non-acute psychiatric
disorders can often speak intelligibly, comprehend the speech
of others , and reason, and many have more in common with
those with typical mental abilities than with those
classified with severe or profound mental retardation or
acute psychosis. However, many have characteristics,
educational backgrounds, and social experiences that can
negatively impact their ability to make decisions affecting
their lives. These can include deficits in basic knowledge,
difficulty with abstract reasoning and in foreseeing the
long-term consequences of a present act, denial of
disability, reduced ability to make and/or communicate a
reasoned choice, limited experience in making independent
choices, or difficulty in delaying gratification (Ellis,
1992, Evans, 1981; Hayden, et al., 1992; Hill and Lakin,
1986; Wikler, 1996; Zetlin and Turner, 1984). The ethical
challenge for scientists is to balance the obligation to
respect the right of those with cognitive deficits to be
treated as members of the moral community, with the need to
ensure that illinformed or incompetent decisions will not
place their welfare in jeopardy (Ellis, 1992; Grisso, 1986;
Lidz, et al., 1984).
Are standards of consent capacity fairly applied?
Since the decisionmaking styles of those without
identified mental disability are rarely evaluated, some have
warned that adults with intellectual impairments may be
unfairly held to a higher standard of competency than
commonly applied to the general population (Lidz, Meisel, et
al., 1984; Morris, et al., 1993). Defining consent competency
simply, in terms of higher-level abstract reasoning skills,
does not do justice to the complexity of human judgment as
situated in a person's experiences, emotions, needs, and
patterns of practical life (Merleau-Ponty, 1945;Widdershoven
and Smits). Scientists recognize the role of affective and
practical factors in the decision making of those without
mental impairments, and respect their "non-rational"
preferences to decline research participation.
Consider, for example, persons with diagnosed disorders
not considered mentally incapacitating who are invited to
participate in a study to determine the efficacy of a
psychopharmacological agent that may potentially reduce
symptoms of their disorder. They have the right to refuse to
participate if they do not want to subject themselves to the
experimental medication's side effects (e.g., nausea, dry
mouth, headaches), despite the fact that in objective terms
such side effects pose "minimal" risk with the potential
benefits of symptom reduction outweighing the temporary
physical discomfort. This is not the case with individuals
with mental deficits who, by being presumed incompetent, must
demonstrate a capacity to make rational decisions, especially
when their wishes are inconsistent with conventional wisdom
(Drane, 1985; Grisso, 1986; Lidz, et al., 1984; Roth, et al.,
1977).
The moral claims of adults with cognitive deficits.
What moral claims do adults with mental retardation have
on science? From a relational perspective, their claims are
no different from those with typical intelligence. They have
the right to assume that scientists are obligated to
communicate with them honestly, to develop procedures that do
them no harm, to act to protect their right to autonomy and
privacy, and to treat them fairly. The special cognitive
status of adults with mental deficits does mean that
procedures to insure that these claims are met require
special efforts. Such special efforts may include the use of
proxy consent if: (a) standards of consent capacity are
applied equally to those with and without mental retardation;
(b) guardian consent is used to protect the personal rights
and welfare of the prospective participant rather than the
interests of science; and (c) the adult with mental
impairment sees proxy oversight as a legitimate and/or
desirable means of protecting her or his interests.
Relational ethics recognizes that in some research
contexts denying cognitively impaired individuals, especially
those in institutional settings, the protection of guardian
consent may result in unfair outcomes. Their limited abstract
reasoning skills, restricted knowledge base, and lack of
experience and opportunity to make autonomous decisions, may
in some contexts make the cognitively impaired particularly
vulnerable to coercion and exploitation. Despite these
vulnerabilities, it is difficult to justify current ethical
procedures that do not require a person's assent along with
guardian permission or that allow proxy consent to override
an individual's objections to research participation.
For example, the principle of justice calls for a
re-evaluation of scientists willingness to rely on proxy
consent for research with only a minor increase over minimal
risk that holds out no potential benefit to a cognitively
impaired individual, but which might provide general
information about her or his condition (Bonnie, 1997).
Individuals without mental disorders have the right to
consent or dissent to requests to participate in research
that may generate information pertinent to their future
welfare or the welfare of others. It is inherently unfair to
require those with mental disabilities to participate in
research that may benefit members of their social group, when
that same requirement is not made of those with typical
intelligence.
For experimentation on mental disability, the science
establishment has also condoned proxy consent over
participant objections for research holding out direct
benefit to the individual, especially when no other
treatments are available (Bonnie, 1997). However, accepting
this violation of participant autonomy rests on a false
distinction between non-therapeutic and therapeutic research.
First, all knowledge generated by science, including basic
research, can potentially lead to application. Second, by
definition, therapeutic research does not guarantee benefits
and, in fact, can pose greater risk to the participant
because of the side effects of the experimental manipulation
or the deprivation of treatment if one is assigned to a
non-treatment control group. Consequently, to give
investigators and guardians greater power in overriding the
objections of vulnerable individuals in treatment research
does not have a convincing moral basis and is unjust if the
dissent of those without cognitive disabilities is considered
inviolate.
Informed consent as a process of justice and care
Relational ethics emphasizes attention to both the person
and the context in which research will be conducted.
Accordingly, when working with adults with identified
cognitive impairment, it is incumbent upon the investigator
to justify the standard of consent that will be required for
each experimental procedure and the specific role that proxy
consent should play in the informed consent process. This
justification should be based upon an understanding of the
characteristics, life experience, knowledge base, and
attitudes toward proxy consent of the individuals who will be
recruited for participation. Such understanding should be
achieved through ongoing dialogue with prospective
participants, their families, and advocates. Engaging
prospective participants and their legal guardians in
discussion regarding consent decisions can also help
determine how proxy consent, when necessary, can reflect both
the participant's wishes and her or his best interests?
From a relational perspective, the responsibility to meet
a selected standard of consent should not rest solely on the
intellectual capacity or prior experience of a person with a
cognitive impairment. Rather, investigators should seek to
reduce the participant's vulnerability to research risks by
providing information essential for a knowledgeable decision
to be made in a format that is conducive to the prospective
participant's learning abilities. Many people with
longstanding cognitive impairments are used to other people
making decisions and may not understand or have experience
applying the concept of autonomy. For these individuals, the
concept of voluntary choice may be an important element of
the informed-consent dialogue. In addition, investigators
should be required to develop consent procedures sensitive to
the ways in which those with cognitive impairments may
express their desire not to participate in a study (e.g.,
physical or verbal signs of anxiety or fatigue, body
movements indicating a desire to leave the situation, verbal
expressions of distress).
Relational ethics and advance directives for
research
As advance directives for health care have become
increasingly accepted in society, some have suggested that
similar directives by those with advancing cognitive
impairment can enhance substitute decision making for
research participation once an individual's mental capacity
has been compromised. Several scholars have provided
excellent overviews of the ethical issues associated with
using advance directives for research (Moorhouse and
Weisstub, 1996; Sachs, 1994). Among the problems inherent in
issuing and following advance directives is that neither the
individual, in the early stages of increasing mental
disability, nor those who will serve as her or his legal
guardians can know with certainty how the prospective
participant will think and feel in a deficient state
(Moorhouse and Weisstub, 1996). In the face of such
uncertainty, protectionist policies precluding research with
the cognitively disabled and paternalistic approaches taking
consent authority away from the participant, are equally
undesirable. Rather, from a relational perspective, despite
limitations in foreseeing future reactions, the prospective
participant is still the most expert in envisioning how she
or he would respond to experimental procedures in an eventual
state of cognitive impairment.
Persons with advancing cognitive impairments can not make
decisions regarding future research participation in
isolation. The process of obtaining ethically acceptable
advance directives requires a series of ongoing co-learning
experiences among scientists, the prospective participant,
and substitute decision maker. This process, like that of
obtaining informed consent, must insure that participant
decisions are free of coercion and exploitation. This means
that statements precluding participation in research are
presented as equally acceptable directives.
During the co-learning process:
- Investigators provide the prospective participant with
information about the nature and rationale for different
types of experimentation, the associated risks and benefits
typically associated with various types of studies, as well
as what is known about her or his future state of cognitive
impairment. Information about experimentation must be
specific enough to allow an individual to assent or dissent
to different types of research (e.g., descriptive or
intervention research, greater than minimal risk,
physically invasive versus behavioral).
- Prospective participants provide the investigator and
future substitute decision makers with information that
helps them understand: (a) the participant's value system;
(b) the way she or he evaluates pain, discomfort, and
embarrassment; (c ) her or his views on altruism; and (d)
other aspects of the person's character and perspective
that will allow legal guardians to approach consent
decisions from the participant's perspective.
- Future guardians must also be encouraged to share with
prospective participants their moral philosophies on
consent-relevant dimensions so that both can decide whether
or not the advance directives can be carried out in a
manner that honors both the participant's and the
substitute decision maker's value orientations.
As in research with persons already identified as
cognitively impaired, there is no ethical justification
for overriding an advance directive that indicates
dissent to participate in research. However, from a
justice-care perspective, advance directives which do not
rule out participation in specific types of studies do
not replace the moral decisionmaking responsibility of
the legal guardian. The fiduciary nature of legal
guardianship obliges substitute decision makers to take
ultimate responsibility for deciding the extent to which
research participation protects the rights and welfare of
those who have placed their trust in them. Thus, a
substitute decision maker' s dissent should override
advance directives that appear to grant consent to
research participation. The advance directive process
should provide a sufficient understanding of the
participant's character and values to assist the guardian
in making consent decisions that most closely represent
the prospective participant's past wishes and protect the
participant' s current best interests.
Consent Policies and Participation Rates for Research
with Minors
Informed consent has been seen by many as the primary
mechanism for respecting the rights and protecting the
welfare of research participants. Children and most
adolescents do not, however, have the legal capacity to
consent, may lack the cognitive capacity to comprehend
the nature of experimental procedures, or perceive they
lack power to refuse participation (Fisher and Rosendahl,
1990; Keith-Spiegel, 1983; Koocher and Keith-Spiegel,
1990; Levine, 1986; Melton, et al., 1993; Thompson,
1990). To insure that more vulnerable persons with
diminished autonomy have their rights as autonomous
agents protected, federal regulations (DHHS, 1991) and
professional codes (e.g., American Psychological
Association, 1992; Society for Research in Child
Development, 1993) require both guardian permission and
assent from the adolescent before a teenager can
participate in research.
Statements regarding confidentiality policies for
research on adolescent risk
Informed consent procedures need to provide
individuals and their guardians with all information that
might affect their willingness to participate in
research, including the potential risks of participation.
In consent practices for adolescent risk research, one
risk often overlooked - or intentionally not included
because investigators worry that it may be a disincentive
to participation - is the possibility that the researcher
will disclose confidential information because of state
laws (e.g., in the case of suspected child abuse),
institutional policies (e.g., harm to self or others), or
ethical standards set by IRBs or the investigator's own
moral compass (e.g., illegal substance use or abuse,
sexually transmitted diseases). Applying a co-learning
procedure, Colleen O' Sullivan and I examined whether
disclosure policies stated in informed consent forms
would deter parental and adolescent agreement to
participate in research on different adolescent risk
behaviors (O'Sullivan and Fisher, 1997). Contrary to
assumptions held by many investigators, the attitudes
expressed by this sample of predominantly white suburban
parents and their teenagers suggested that for some risk
contexts confidentiality policies may actually be a
deterrent to research participation.
In our examination of prospective participant
opinions, a majority of parents indicated they would
refuse to grant permission for their teenager to
participate in investigations of peer harassment, child
maltreatment, suicide, sexually transmitted diseases, and
violent behavior if they were informed that investigators
would neither discuss the problem with the teenager nor
report the problem to a concerned adult (O'Sullivan and
Fisher, 1997). Moreover, both parents and high school
students indicated they would agree to participate in
research on physical and sexual abuse, suicide, and
sexual harassment if the investigator had a policy of
informing parents if any of these risk factors were a
problem for the adolescent. Parents and adolescents also
indicated they would consent to participation in studies
on other risk factors (e.g., substance use, shyness,
truancy, stealing, and vandalism) if they knew that the
investigator would discuss the problem with the teenager
and assist him or her in getting help.
Information gained from this study underscores the
value of obtaining the views of prospective participants
and their guardians about different confidentiality and
disclosure policies. This information challenges
traditional investigator biases which assume that consent
forms which include notice that an investigator will
refer adolescents found to be in jeopardy for services or
report their problem to a concerned adult participants
will reduce participation rates. The views expressed by
parents and teenagers suggest that alternatives to
confidentiality policies may actually increase
participation in some types of studies and points to the
importance of telling individuals and their guardians
about disclosure policies during informed consent
procedures.
Questioning the use of passive consent as a means of
increasing participation in research with children and
adolescents
The cost-benefit calculus has often been applied
unjustly to decisions to waive the requirement for
parental permission and guardian consent when research
involves ethnic minority participants. To insure the
rights of those who do not have the legal capacity to
consent, federal regulations (DHHS, 1991, 46.408a; OPRR,
1993) require the permission of legal guardians, as well
as the assent of the minor, before a child can
participate in research. In some situations, however,
federal regulations (DHHS, 1991, 46.408[c]) allows
parental permission to be waived when data are collected
anonymously and questions are assumed to be noninvasive
and non-harmful or when such consent may jeopardize the
minor's welfare. When guardian consent is waived or when
minors are wards of the state, federal regulations
(46.408[c] and 46.409 [2.b]) require that an advocate for
the minor verify the minor's understanding of assent
procedures, support her or his preferences, ensure that
participation is voluntary and that the minor can
terminate participation, assess reactions to planned
procedures, and ensure that debriefing is appropriate
(Fisher, 1993; Fisher, Hoagwood, and Jensen, 1996; OPRR,
1993).
Federal guidelines 46.408[c] also allow for waiver of
guardian consent in an unfortunately gray area defined in
federal regulations 46.116[c.2] and 46.116 [b.3] as
"research that cannot be practically carried out without
the waiver or alteration." These regulations can lead to
an abuse of participant rights in situations where the
investigator successfully argues that obtaining parental
permission is a legitimate "practical" reason for waiving
the consent requirement. Ethnic minority children,
especially those living in economically disadvantaged or
non-English speaking communities, are particularly
vulnerable to scientific exploitation supported by
conventional justifications for consent waivers.
Investigators often find recruitment in these
neighborhoods difficult. In such instances, some have
condoned the use of "passive consent" procedures (sending
home a letter to parents asking for a response only if
the guardian does not wish their child to participate) as
an acceptable means of protecting child welfare. Middle
class majority populations are not immune from the use of
passive consent procedures, especially when school
principals or administrators in children's psychiatric
centers, out of paternalism or convenience, support or
encourage its use.
It has been argued that passive consent is not an
ethical alternative to active guardian consent because
its use creates an unjust situation in which certain
populations are disproportionately deprived of the
protections afforded by parental and guardian consent
(Fisher, 1993; Fisher, et al., 1997; Nolan, 1992). I
would also argue that the science establishment's
acceptance of passive consent as a tool of convenience to
enhance participation rates reflects the scientistic
assumptions that knowledge gathering is a fundamental and
unconditional good and that scientists are entitled to
use humans as material for their pursuits. As a
consequence, underlying ethical justifications for the
use of passive consent is the implicit assumption that a
caring and knowledgeable guardian would perceive the
research as important and desirable for her or his child.
This assumption leads to the damaging inference that
parents who do not return consent forms either lack the
knowledge to appreciate the importance of the research or
are unconcerned about their child's welfare (Fisher,
1993).
No empirical data exist to support these assumptions.
Such views fail to consider that parents may decide not
to return consent forms because they do not approve of
the goals or methods of the research, are generally
suspicious of scientific research, or are concerned that
the signing of any form may trigger inquiries from
immigration, welfare, or other government agencies. In
the absence of knowledge derived from scientist-community
dialogues on the potential threats of passive consent to
participant autonomy and adolescent welfare, unwarranted
assumptions regarding community attitudes toward informed
consent procedures risk substituting investigator
paternalism for parental permission.
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Conclusion: Power and
Partnership
Relational ethics draws our attention to the
interpersonal nature and obligations inherent in the
scientist-participant relationship. It expands the
traditional universalistic, principle orientation of
ethics-in-science decision making to include the
importance of intersubjectivity, particularity, and
context, and moves scientists toward a reinterpretation
of their own moral agency (see Smith, 1985;Walker, 1992).
A relational perspective also recognizes power-asymmetry
as an inherent feature of human subjects research.
The scientist-participant relationship is not purely
contractual because the scientist has directive power
that the participant does not have and because the
hypothesis may not be known to the participant. Most
prerogatives lie with the researcher. A scientist has the
prerogative to select who will be recruited for research
and the question under investigation. The participant has
the prerogative to decline research participation or
withdraw once consent has been granted. An investigator
can come back and ask a person to participate in an
extension of the research or a second study, but the
participant does not usually have the prerogative to ask
for additional scientific assessments of treatment
efficacy or knowledge generation once a study is
completed. The command performance for the participant is
to apply her or his best efforts to follow the
experimental protocol during the study at the direction
of the scientist. The command performance of the
scientist is to protect the scientific and ethical
integrity of the study before, during, and after
experimentation-however, the investigator's
responsibilities are not commanded by the participant,
but by the scientific establishment and the
investigator's IRB.
When working with individuals identified as
vulnerable, the responsible scientist needs to insure
power differentials are not a product of the
participant's special circumstance. Context-derived power
asymmetries can occur when guardian consent is given
higher priority than participant assent simply because of
an individuals physical, psychological, or social status.
Power asymmetries are also magnified when the
experimental arrangement itself increases participant
dependency. This can occur, for example, when an
individual with cognitive disabilities or inexperience in
challenging authority freely assents to participation,
but is not aware of her or his right to withdraw
participation, does not know the actions she or he would
take to withdraw, or believes that she or he would do so
at great cost. Potentially destructive power asymmetries
also emerge when science is used as a tool of
subordination to legitimize oppressive policies
(Prilleltensky, 1997).
Those who seek greater symmetry in power relationships
emphasize that each party must derive something out of
the relationship and be able to exercise discretionary
control over the resources prized by the other (Goodin,
1985). However, these resources must be used to enhance,
not compromise, the ethical and scientific integrity of
experimentation. Relational ethics recognizes both
scientists and participants can misuse their influence to
compromise the autonomy of the other: Scientists can use
their status and control of resources to coerce
participant compliance in treatment research that the
participant may view as harmful, unjust, or unworthy.
Participants or their community representatives can
exploit the science establishment's dependency upon their
cooperation to coerce investigator compliance in research
practices that compromise scientific validity. In
relational ethics, the development of ethical procedures
must derive from mutual accommodation rather than
coercion.
Although power relationships between scientist and
participant may not be truly symmetrical, they can be
complementary. Such complementarity must be based upon
trust that each party will work to understand and respect
the value orientations of the other. Relational ethics
views an action as unethical if it violates the moral
values of either the scientist or participant. If
co-learning discourse reveals that mutual accommodation
can not take place, the investigator must be willing to
abandon a particular research plan. The argument is that
to truly accept a relational model, one must value the
moral claims of both investigators and research
participants. Scientific procedures gain moral legitimacy
only if they are the product of autonomous solutions
which do not require compromises that would coerce,
exploit, or deprecate the values of either party. In a
justice-care based approach, ethics-inscience decision
making is based upon respect and mutual accommodation
between scientist and participant, rather than compromise
and coercion.
Relational ethics encourages scientists to engage
research participants as partners in creating
experimental procedures reflecting both scientific and
interpersonal integrity. It does not seek to encourage
federal regulations that shackle science or that promote
protectionist policies that create research orphans out
of vulnerable populations. Rather, a relational
perspective should serve as a guide for moral discourse
that moves science toward an orientation of the good life
lived with others in social conditions that are just
(Widdershoven and Smits, 1996). Scientific ethics is a
process which draws upon investigators' human
responsiveness to those who participate in research and
their awareness of their own boundaries, competencies,
and obligations. If becoming a moral subject is the
critical moral task for all individuals (Smith, 1985),
then recognizing that morality is embedded in the
investigatorparticipant connection is the essential moral
activity of science.
Back to Top
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