Commentary: Ethical Issues in Longitudinal Research with At-Risk Children and Adolescents
Author(s):
Brian Schrag
Scope and nature of the study
Judy proposes to study fourth, sixth and eighth graders who
have been "exposed to violence in their community." The scope
and nature of the study are important in thinking about the
ethical considerations and implications of the study. The
children range widely in age and maturity, and they will
presumably mature considerably by the end of the four-year
study. The subjects' capacity for informed consent and their
concern for confidentiality and privacy may vary initially and
may change over the course of the study.
What does the category of "community violence" include? Does
it include domestic violence within their own nuclear families?
Does it exclude domestic violence within the nuclear family,
but include violence in the extended family and all other
exposures to violence in their community? Does it exclude all
family violence (nuclear and extended) but include all other
violence in their immediate community? Does the study propose
to investigate violence suffered directly by students at the
hands of family, neighbors and strangers; does it propose to
study the impact of merely observing or being aware of such
violence; or will it attempt all of the above?
Through individual interviews and group-administered
surveys, the study proposes to measure the subjects' amount and
frequency of exposure to community violence as well as their
psychological, behavioral and adaptational responses to
violence. If the study includes experiences of violence in the
nuclear or extended family, subjects may be probed about
experiences of child abuse and other violence by family
members, among other things. If it focuses only on violence
witnessed by the students, including the family setting, the
investigator may solicit information from subjects that may
include information about domestic abuse in their families. In
either case, this probing certainly constitutes invasion of
privacy and has implications for obtaining informed consent
from the parents or appropriate family members. Will parents
clearly understand that their children's participation in the
study may result in invasion of the family's privacy?
If the study focuses only on the student's direct
involvement in violence outside the family, the investigator
may solicit incidents of violence the subject has committed or
which were committed against the subject. At the extreme, that
may involve admitting to participation in gang activity, or
criminal activity or being the victim of sexual assault. If the
study focuses only on the student's awareness of violence in
the community, students may admit witnessing violent criminal
behavior. These questions make the students extremely
vulnerable and have serious implications for the process of
obtaining informed consent from both parents and students as
well as for level of confidentiality maintained in the
study.
Will students understand that they may reveal such
information as subjects? Will they be clear about the degree of
confidentiality maintained? Will parents expect to be informed
of the subjects' behavior?
The study solicits students' psychological responses (
depression, suicidal thoughts), behavioral responses ( drinking
) and their adaptational responses ( delinquency and sexual
promiscuity). These questions raise all sorts of issues of
privacy, confidentiality, informed consent and researcher's
responsibilities for the welfare of subjects. Judy may become
aware of many instances of dangerous and even illegal behavior
that she is legally required to report. Will students
understand that they may reveal such information during the
study? Will they expect it to be kept confidential? Will
parents expect this information? Will the parents expect Judy's
first concern to be the welfare of her subjects? Will parents
assume Judy has the expertise needed to act for their child's
welfare if she discovers the child is engaged in risky
behavior? Does Judy have an obligation to intervene on behalf
of the subjects even if that means weakening or ruining the
study? Is Judy's paramount obligation not to the subjects'
welfare but to carry out the research, in the best manner
possible?
Judy can anticipate many of these issues before the protocol
is designed. It may be possible to practice "preventive ethics"
and design the protocol to avoid some of the ethical issues
that may otherwise develop as the study progresses.
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Informed consent and assent
This research will be highly invasive of the privacy of the
children and may be equally invasive of the privacy of other
family members. The study may also place the subjects at
considerable risk if their confidences about sensitive matters
are violated. These facts alone are one argument for requiring
the child's assent as well as the family's permission. The
research is not likely to provide any direct benefit to either
the children or their families, although it is possible that it
will yield generalized knowledge of benefit to all children. In
such circumstances, federal guidelines require that the
researchers solicit the "assent" of minor children to
participate in research if the children are capable of assent.
(Title 45, Code of Federal Regulations 46.408 (a) 1991)
Parental or guardian permission is also required. (45 CFR
46.408 (b) 1991) In this case, the quality of the subjects'
assent and of the parents' permission is an extremely important
moral issue.
The notion of assent of minors and how it relates to
informed consent is unclear. (Macklin, 1992, 90) Fourth graders
are not adults. They may not be capable of fully appreciating
the limitations of the trust they should place in the
researcher. They may not understand the risks when confidences
are breached. They may underestimate how their attitude toward
invasion of privacy may change as they mature. They may not be
capable of balancing all these considerations as well as an
adult, who will have greater experience and maturity. (See
Macklin, 1992, 101, on understanding privacy.) Nevertheless,
even fourth graders, and clearly sixth and eighth graders, are
capable of understanding a great deal if information is
presented appropriately. (Thompson, 1992, 61) It is morally
significant that their assent be sought only after they receive
that information.
The variability of ages, developing maturity levels and the
length of the study all complicate the assent issue. Some
subjects will enter the study as fourth graders; others will
end the study as juniors or seniors in high school. Children
become much more sensitive to privacy as they move into
adolescence. (Thompson, 1992) Subjects may assent to invasions
of privacy as fourth graders that they would not assent to as
eighth graders. The law recognizes the capacity of young
adolescents to make adult-like decisions. In some states,
minors can legally self-refer themselves for medical treatment
for venereal diseases, alcoholism, contraceptives and abortions
without the knowledge or consent of their parents.
(Brooks-Gunn, 1994, 116; Rogers et. al., 1994, 3)
Children in this study have a right to understand what they
are assenting to. Judy should provide the subjects with at
least the following age-appropriate information
- An explanation of the nature and purpose of the research
and the nature and role of the researcher. The children
should understand that the research activity is not intended
to benefit them and that the researcher's primary concern is
not to benefit them as subjects. This point is particularly
important for younger children. They may tend to think that
an authority figure who is called doctor (Ph.D.) and meets
with them in the school setting has a role akin to their
family physician or a teacher and is acting in their best
interests.
- A clear understanding of the sorts of information that
they will be asked to share.
- A clear understanding that they have a right to refuse to
answer any of the questions raised in the study. A clear
understanding of the level of confidentiality of the
information they share and the limits of that
confidentiality. They should clearly understand the
circumstances, if any, in which Judy will break their
confidences and with whom she might share that information,
including parents, health officials or legal
authorities.
- A clear indication that they can drop out of the study at
any point.
- Since the maturation levels of the subjects may change
significantly over four years, Judy should consider the
provision that the subjects' assent will be renegotiated at
the beginning of each year of the study.
- Parents have a right to know what they are giving
permission for. A careful procedure for informing the parents
is required.
- Judy should take pains to ensure that parents understands
that the research activity is not intended for the
therapeutic benefit of their children.
- Judy should tell parents specifically the sorts of
information she will collect from the children and with whom
it might be shared. Parents should be clear about the kinds
of information Judy is legally required to report to
authorities, such as suspected child abuse.
- Parents should understand what, if any, confidential
information gained from their child Judy will or will not
share with the parents about the child. In particular,
parents should be clear how Judy will deal with information
about serious psychological symptoms or risky behavior
manifested by their child or whether she will disclose
information about the child's self-referrals. If such
information is not shared with the parents, can the parents
expect that Judy will seek interventions on behalf of the
child, where appropriate?
All of this implies that Judy must plan for a sophisticated
process of informing potential subjects and their parents
before obtaining assent and permission. Merely sending out
permission slips to be signed and returned will not be
sufficient. Judy needs to plan a more elaborate method of
informing potential subjects and their parents in the consent
process. She may also need to contact a much wider pool of
potential subjects than otherwise anticipated. It is likely
that when parents understand what she will be doing and
students are clear about their rights to withdraw from the
research, more parents will refuse to give their permission,
and more subjects will withdraw or may be dropped during the
course of the research.
We have argued that Judy has a moral obligation to make
clear to both prospective subjects and their parents exactly
what they can expect from Judy should she become aware that
their child is in a high-risk situations. What exactly should
she be prepared to do in such situations?
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Judy's moral obligation for subjects'
welfare
The case for doing nothing
- Judy may argue on three grounds that she has no moral
obligation to do anything to safeguard the welfare of her
subjects during the research. Judy's research simply involves
watching what would have happened to these children anyway,
whether or not she was conducting the research; her study is
a kind of natural laboratory. Whether or not Judy conducts
the research, the same children would have engaged in the
same risky behavior in exactly the same way, without their
parents' knowledge. She has an obligation not to harm
subjects but she is not causing any harm to the subjects. If
she intervenes, she may not be able to maintain the integrity
of her research and research program. The long-term benefits
of the study would outweigh anything that might happen to
subjects because she did not intervene. Suppose that Judy
obtains permission from parents for their child to
participate in the study with the clear understanding that
should Judy discover that their child is engaging in high
risk behavior, she will not act on that information in any
way, unless required by law. The child also assents. Judy
will not inform parents, she will not take steps to assist
the child, even if she knows that she is the sole adult who
is aware that the child is in a threatening situation or is
engaging in self-destructive activity that presents a clear
and present danger to the child (anorexic behavior, heavy
drinking, drugs, sexual promiscuity or gang activity). Judy
will simply carry on her research.
- Judy may take the position that she is not morally
obligated to do anything, given the fact that she is doing no
harm to the children, that she is armed with parental
permission and child assent to a noninterventionist policy on
her part, and that, given such a policy, she will maximize
benefits by conducting the best study possible. She has no
obligation to intervene on behalf of children at risk; all
things considered, she has an obligation to refrain from
intervening in order to maximize benefits. She is satisfying
the principle of beneficence as articulated in the Belmont
Report, which provides ethical guideline for research on
human subjects. (National Commission, 1979). The first part
of this argument parallels the argument given by researchers
in the Tuskegee syphilis experiment (Jones, 1993). Unlike
Judy's project, those adult subjects had not given their
informed and voluntary consent to be experimental subjects.
Nevertheless, Judy's position is subject to some of the same
criticisms.
The case for doing something
- To see why Judy is mistaken, consider for a moment how we
would define the moral obligations of ordinary persons (who
are not researchers) in a somewhat parallel situation.
Imagine that Judy is not a researcher but an ordinary citizen
who walks through a park and notices a fourth grader she
knows, sitting alone, playing Russian roulette with a gun.
She realizes that she is the only adult in the area aware of
the child's activity, and yet she takes no action but walks
on by. Normally, we would say Citizen Judy has an obligation
to intervene to stop the child from harming himself, if she
can do so at minimal risk to herself. On what moral grounds
would we make such a claim? The principle of beneficence is
one moral principle that we recognize as applicable to all
persons. That principle states that we all have an obligation
to promote the good and to prevent or avoid doing harm.
Notice that an obligation to maximize benefit presupposes
this obligation. Unless we already have an obligation to
promote the good and avoid harm, we could not have an
obligation to maximize the good.
The obligation to promote good and avoid harm can actually
be regarded as a set of prima facie obligations to:
- avoid doing harm,
- prevent harm,
- remove harm and
- promote good.
- Furthermore, these obligations are listed in their order
of stringency. The stringency has in part to do with the fact
that it takes less effort avoid doing harm than it does to
prevent a harm, to remove a harm or to do good. I should not
push children off the end of a pier; I have a less stringent
obligation to buy them an ice cream cone. If we can prevent
or remove a harm at little risk or cost to ourselves, we have
an obligation to do so. If I am standing on the pier and
notice that a child has fallen into the water, and if I can
save it by throwing a lifeline, I have a moral obligation to
do so. The implication of this articulation of the principle
for Citizen Judy is that she not only has an obligation to
avoid harming the child, she also has an obligation to try to
prevent the harm about to happen, if she can do so at minimal
risk. (Frankena, 1973, 45-47)
- In her research, Judy may become aware that one of her
subjects is engaging in risky behavior such as contemplating
suicide, practicing unprotected sex, engaging in heavy
drinking, abusing drugs or beginning to run with a gang.
Suppose that Judy can, at minimal risk to herself, do
something to prevent the child from coming to harm but
decides to do nothing about it. Unless Judy can show how her
status as a researcher excuses her from this obligation, she
is mistaken in thinking she can simply do nothing. One might
argue that the difference is that Judy is a scientist and, as
such, she has professional moral obligations that override
the obligation of ordinary morality to prevent harm to
another. Judy might give three different claims to support
that position.
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Three claims for excusing an obligation for
subjects' welfare
The obligation to welfare is overridden by the obligation
to do research.
- Judy might argue that scientists have a professional
obligation -- and indeed an overriding obligation -- to
conduct their research in the most rigorous and
scientifically sound manner possible. The best contribution a
scientist can make to the general welfare is a contribution
to the general knowledge, which will allow effective social
policy. In a conflict of general and professional moral
obligations, professional obligations are trump. In a
research project designed to study the impact of violence in
children, one is likely to encounter a higher incidence of
children with risky behavior. To intervene to help a subject
would threaten the integrity of the research project and thus
society might lose the tremendous benefit of such research
for children everywhere. Hence Judy ought not intervene.
- However, a mere conflict of professional obligations with
the obligations of ordinary morality does not excuse
scientists from the obligations of ordinary morality. Simply
being engaged in scientific activity does not excuse
scientists, for example, from prima facie obligations not to
steal, to tell the truth or to come to the aid of a person in
distress even if doing so interferes with their scientific
activity or jeopardizes the results of a particular research
project. Professional moral obligations presuppose general
moral obligations; they are not independent of them. (Bayles,
1989, Chapter 2).
- The obligation to welfare is waived by parental
permission. Judy cannot be excused from obligations of
ordinary morality in this case by the permission of parents
and child. Recall the case of the child playing Russian
roulette. Suppose, for some bizarre reason, the parent had
given Judy permission to ignore their child in the event she
ever saw the child playing Russian roulette. We would not say
Judy was absolved from a moral responsibility to act simply
because the parent gave her permission. (We would be more
inclined to say that the parent was acting irresponsibly.)
Would it make any difference if, as a researcher, Judy had
obtained similar permission from the parent?
- The Belmont Report articulates two principles guiding
human research that are relevant here. First is the principle
of treating subjects with the respect due humans: One must
never treat humans solely as a means to one's own ends.
Suppose that Judy, in virtue of her research, is the
sole adult who is aware that a child is
entertaining the possibility of suicide. She knows that if
she does not act, no one will. If Judy takes no action
because that would interfere with the research program, then
she is treating the child solely as a means to her own ends
and is violating the principle of respect for persons.
The second ethical principle is that of beneficence.
As the Belmont Report puts it, the principle of beneficence
is a twofold obligation. Two general rules have been formulated
as complimentary expressions of beneficent actions in this
sense:
- do not harm and
- maximize possible benefits and minimize possible
harms.
I have already indicated that I do not think this
articulation of the principle of beneficence is adequate
because the claim that we have an obligation to
maximize possible benefits already presupposes
that we have a prior and more stringent obligation to do good
and avoid evil. Judy has a stronger prima facie obligation to
prevent harm to her subject than she has to maximize
benefits.
The welfare obligation is overridden by the obligation of
confidentiality.
- Suppose Judy promises the subjects that she will never
violate their confidence and never reveal to anyone,
including parents, anything the subjects tell her. Normally
we would say we have an obligation to maintain such a
confidence because we have promised to do so. It is not clear
on what grounds one would argue that keeping promises and
confidentiality always trumps all other moral considerations,
however. There may be situations in which other moral
considerations outweigh an obligation to keep a promise --
for example, situations that threaten the life of the person
promised. There are no compelling moral grounds for asserting
that keeping confidences is always the highest moral
obligation. It is also the case that Judy has legal
obligations to report certain kinds of criminal behavior such
as suspected child abuse. She should not make promises she
knows she cannot keep.
- I have argued that one must conclude that Judy cannot
morally justify the position that she should never intervene
by appealing to the mere fact that she is a researcher. If
Judy's research proposal can reasonably be expected to give
her knowledge that a child subject's health or welfare is
seriously threatened and the situation requires immediate
intervention, she must recognize that she has a prima facie
obligation to take some action in some of these
circumstances. She cannot morally defend a position of never
doing anything. It is not clear that either the federal
guidelines or the Belmont Report would reach this conclusion,
but other standards do. The Society for Research in Child
Development asserts:
- When, in the course of research , information comes to
the investigator's attention that may jeopardize the child's
well-being, the investigator has the responsibility to
discuss the information with the parents, guardians or with
those expert in the field in order that they may arrange the
necessary assistance for the child. (SRCD, 1993, 339)
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Specifying an obligation to act.
It behooves Judy to take this moral responsibility into
account as she designs, seeks funding for and carries out her
research. She should make clear to the funding agent, and to
parents and subjects, what interventions she is prepared to
undertake on behalf of the children, even if those steps impair
the quality of the research. However, the fact that Judy has an
obligation to take some action to prevent harm to
subjects, does not establish what action she ought to take.
There are certain parameters on what Judy should and should
not do. 1) Judy has a legal obligation to report to appropriate
authorities certain things such as suspected child abuse. (Some
have argued that the specific issue of reporting suspected
child abuse is a morally problematic requirement since less
than half of all reported cases are substantiated and reporting
suspected abuse when it has not happened may well do serious
harm to both child and parents. [ Scott-Jones, 1994, 101-103])
2) If Judy has some obligation to protect the welfare of the
child, she should not report to parents things that may result
in the parents harming the child. Notifying parents may only
make things worse (for example, if there is a clear case of
child abuse by a parent). 3) It is reasonable to argue that
Judy should not report to parents the fact that their child has
referred herself to agencies to seek medical help in those
instances in which the law allows the child to do so without
the knowledge or consent of parents. (Scarr, 1994, 153). Judy
has an obligation to make clear in the process of obtaining
informed consent from parents and subjects that she will
operate within these parameters.
If we assume that Judy, parents and subjects all understand
she will act within these three parameters, a large gray area
remains of risky behavior of subjects she may uncover in the
course of her research. Should she ever notify the parents
about such activity, encourage students to refer themselves for
help, or initiate action on behalf of the subjects?
Privacy, confidentiality and parental
responsibility
A central issue here involves conflicts between maintaining
the confidentiality and privacy of child subjects, interfering
with the responsibilities of parents, protecting the subjects'
welfare and maintaining a viable research program.
As a moral agent, Judy has a prima facie obligation to
maintain her subjects' privacy. All persons, including
children, have a right to privacy, and can be wronged when it
is violated. Research suggests that children value privacy,
even at a young age. (Melton, 1992) As children mature, privacy
is increasingly important as an indicator of independence and
self esteem; it is necessarily paralleled by a reduction of
parents' right of control over the child. (Macklin, 1992, 103;
Melton, 1992) Notice that one can morally wrong a person by
invading his or her privacy whether or not confidentiality is
involved. Violating confidences is only one way of invading
privacy.
If Judy has promised the children to keep certain
information from the study strictly confidential, then breaking
that confidence both invades their privacy and violates a
promise. An obligation to preserve the subject child's
confidentiality is especially strong if breaking that
confidence to parents or others is likely to result in harm to
the interests of the subject.
As a scientist, Judy may be concerned that breaking
confidentiality may also unravel the study. Once one child's
confidence has been broken, that child is unlikely to be candid
and may have to be dropped from the study. As other children
learn that their information is not kept confidential, they may
wish to drop out of the study. If children know in advance that
their confidences may be breached, they may not agree to do the
study.
Judy might consider informing subjects and parents that,
subject to the parameters already identified, she will keep
everything else she learns about the subject absolutely
confidential. But she might conceal from them her intention to
break a confidence, if extreme circumstances warrant it. This
plan may initially reassure subjects of confidentiality and
thus increase the likelihood that they will agree to
participate, and it includes a plan for protecting the
subjects' welfare or informing parents, if necessary.
This strategy is not a good idea. If Judy knows from the
beginning that this is what she intends to do, then she is
engaging in a deceptive practice that undercuts the moral
legitimacy of the subjects' assent. If she breaks confidences
more than once, the word may get around that Judy does not
maintain the confidences she said she would maintain, and the
study may unravel anyway. It would be better to tell all
parties from the beginning that if Judy believes that the
subject is in clear and present danger, she may break
confidences and tell the parents or take other action.
This discussion has focused on preserving the subjects'
privacy and confidentiality, maintaining the integrity of the
study and meeting the researcher's obligation to protect the
subjects' welfare. Parents' authority and responsibility to
care for their children must also be considered. What claim do
parents have to information about their child's risky
behavior?
Return to the case of Citizen Judy walking by the fourth
grader who is playing Russian roulette. Suppose she intervenes
and stops the child from playing Russian roulette and then
notices that his family, whom she also knows, is not far away
and is unaware of what has just transpired. Instead of
notifying the,family, Judy says nothing to them and whisks the
child off to see a counselor without the family's knowledge.
She recognizes that she has an obligation to do something for
the child's welfare but maintains that her obligation does not
include notifying of the parents since that might violate the
child's privacy rights.
Normally we would say that Citizen Judy has an obligation to
make the family aware of the event because of the presumption
that it is the family's business and responsibility to care for
their children; that includes keeping children from harming
themselves. Parents may well claim that the family is best able
to judge what is in the child's best interests in these
situations. It is also the family that will have to deal with
the situation and the consequences of the child's action.
We have already indicated Citizen Judy may be right to avoid
notifying the parents if she has good reason to think the
parents would make the situation even more dangerous for the
child. That important set of circumstances aside, why should
Judy assume that the child's best interest is served by
substituting her judgment for that of the family? Why should
she assume that maintaining the child's privacy rights is
preferable to notifying the family and allowing their judgment
to take over?
There is something wrong with Citizen Judy assuming the role
of protector of the child because it is precisely the
responsibility of parents to care for and nurture
their own children and to keep them from harming themselves.
Parents have a prima facie claim to be informed when their
children are engaged in harmful activity even if that
notification is at the cost of the child's privacy,
confidentiality and self-determination. Parents' claims may
diminish with the maturity of the child, but the burden of
proof ought to be on those who would ignore that prima facie
claim. Even John Stuart Mill, one of the most ardent defenders
of individual rights and the private right to private damage,
recognized the limitations on the notion of self-determination
as applied to children
Over himself and over his own body and mind, the individual
is sovereign. it is perhaps hardly necessary to say that this
doctrine is meant to apply only to humans being in the maturity
of their faculties. We are not speaking of children or young
persons below the age which the law may fix as that of manhood
or womanhood. Those who are in a state that requires being
taken care of by others, must be protected from themselves as
well as against external injury. (Mill, 1961, 263)
Judy might argue that if she notices any risky behavior of
such a serious nature, either the parents are already aware of
it or, if they are not, that is evidence that they are not
competent to deal with the problem. Therefore it is not in the
child's best interest to notify the parents, and the parents do
not have a right to be informed, at least not until other
appropriate steps are taken. Once Citizen Judy is aware of a
subject's risky behavior, she might counsel the child, offer to
refer the child to competent professionals, or inform or
consult with appropriate care givers or authorities. All of
these options would address the child's welfare but preserve
the child's privacy and confidentiality from their parents.
Only at some later date, if ever, would the parents be
notified.
The rationale for this approach, some have argued,
presupposes a problematic view of the family and the relation
of children's interests to the family and to parental and
authority and responsibilities (Brown, 1982; Steinfels, 1982;
Macklin, 1982). In particular the child is simply one member of
an aggregate of individuals (family) bent on self-development
and self-fulfillment. The interests of parents and children may
conflict. Consequently, parents have only limited capacity to
speak for the child's interests in the best of circumstances,
and it is reasonable to think that a skilled professional may
do as well as the parent. Hence the moral authority of parents
over their children and the right to have information about
their children is limited. It would not be wrong for an
outsider to intervene to serve as interpreter, spokesman and
protector of the child's interests. Resolving this issue is
beyond the scope of this commentary. Notice that Citizen Judy
knows some very important information about the child that the
parents do not have. That fact gives her the power to prevent
parents from carrying out their obligation to protect their
child from harming himself.
Does the situation change if Judy is not just an ordinary
citizen but a researcher? If she has this knowledge about the
child, it is not by happenstance. Rather, it is because she is
carrying on research with the parents' permission. What would
good and reasonable parents agree to in such research? Would
they expect a researcher to notify them if their child were
engaged in risky behavior? They may expect it, precisely
because they take seriously their responsibility to protect
their children from harming themselves. Would they agree to
having their children participate in an experiment if they knew
such information would not be shared with them?
If Judy has a moral obligation to act on behalf of the
welfare of the child, and if parents waive a claim to be
informed of risky behavior, that constitutes ceding
decision-making power to Judy to initiate treatment for the
child. Would good and reasonable parents agree to that?
Parents might reason that any information about their
child's risky behavior acquired by the researcher is
information the parents would not have received otherwise.
Parents might be willing to have a researcher act for the
benefit of the child on the grounds that getting help for their
child in this way is better than no help at all.
This case raises very complex issues for designing a
protocol that is ethical and still allows the possibility of
good research. Judy faces issues in Part 4 that could be
avoided by full disclosure to prospective subjects and their
parents of the degree to which she will share information of
risky behavior with parents. It is perhaps an open question if
enough subjects and parents will agree to participate to make
the study possible, once they have been so informed. What Judy
cannot do is to cut any of these corners in order to conduct
the research.
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References
- Bayles, Michael D. Professional Ethics. 2d
ed. Belmont: Wadsworth, 1989, pp.17-31.
- Brooks-Gunn, J., and Rotheram-Borus, M. J. "Rights to
Privacy In Research: Adolescents Versus Parents,"
Ethics and Behavior 4 (2, 1994): 109-121.
- Brown, P. "Human Independence and Parental Proxy." In
Willard Gaylin and Ruth Macklin, eds. Who Speaks for
the Child? New York: The Hastings Center, 1982.
- Department of Health and Human Services. "Protection of
Human Subjects." Code of Federal Regulations,
Title 45, Part 46 revised, 1991.
- Frankena, William. Ethics. Englewood Cliffs:
Prentice Hall, 1973, pp. 45-48.
- Jones, James H. Bad Blood: The Tuskegee Syphilis
Experiment, 2d ed. New York: The Free Press,
1993.
- Macklin, Ruth. "Autonomy, Beneficence and Child
Development: An Ethical Analysis." In B. Stanley and J.
Seiber, eds. Social Science Research on Children and
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