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Informed consent and

neuropsychological assessment:
Ethical considerations and proposed
guidelines
a b
Doug Johnson-greene , Corinne Hardy-morais , Kenneth M.
c d e
Adams , Christine Hardy & Paula Bergloff
a
Department of Physical Medicine and Rehabilitation , Johns
Hopkins University School of Medicine , Baltimore, MD
b
University of Windsor , Ontario, Canada
c
University of Michigan and Ann Arbor Veterans Affairs Medical
Centers ,
d
Thomas M. Cooley School of Law ,
e
Baylor College of Medicine and the Institute for Rehabilitation
and Research , TX
Published online: 08 Nov 2007.

To cite this article: Doug Johnson-greene , Corinne Hardy-morais , Kenneth M. Adams , Christine
Hardy & Paula Bergloff (1997) Informed consent and neuropsychological assessment: Ethical
considerations and proposed guidelines, The Clinical Neuropsychologist, 11:4, 454-460, DOI:
10.1080/13854049708400478

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 The Clinical Neuropsychologist 1385-4046/97/1104-454$12.00
1997, VOI. 1 1 , NO. 4, pp. 454-460 0Swets & Zeitlinger

THE ETHICAL NEUROPSYCHOLOGIST

Informed Consent and Neuropsychological Assessment:

Ethical Considerations and Proposed Guidelines*
Doug Johnson-Greene’, Corinne Hardy-Morais2, Kenneth M. Adams3, Christine Hardy4,
and Paula Bergloff5
‘Department of Physical Medicine and Rehabilitation, Johns Hopkins University School of Medicine,
Baltimore, MD, *University of Windsor, Ontario, Canada, 3Universit of Michigan and Ann Arbor Veterans
Y
Downloaded by [Mount St Vincent University] at 20:18 05 October 2014

Affairs Medical Centers, 4Thomas M. Cooley School of Law, and Baylor College of Medicine and the
Institute for Rehabilitation and Research, TX

ABSTRACT

The rationale for obtaining informed consent from patients contains a number of legal, ethical, and moral
arguments that are well entrenched in the medical community but which have been embraced only recently
by psychologists. The current Ethical Principles of Psychologists and Code of Conduct (1992) elucidate
informed consent guidelines for treatment and research, but do not provide the same degree of clarity
concerning informed consent for clinical assessment. The purpose of this paper is to open a dialogue about
the use of informed consent in neuropsychological assessment and to provide proposed recommendations
for obtaining informed consent from patients receiving neuropsychological evaluations.

Informed consent has been depicted in the medi-
cal literature as an ideal whose origin has been
carefully sculpted from legal, moral, and ethical
influences. The doctrine of informed consent
strikes a delicate balance between a patient’s
interest in determining the course of their treat-
ment and a clinician’s interest in the health of
the patient (Harowitz, 1984). To this end,
informed consent has been described as a shared
decision making process (Sprung & Winick,
1989). The central theme of informed consent is
promotion of patient autonomy (Munson, 1992),
a proposition consistent with the basic premises
of clinical psychology. In the case of neuropsy-
chological assessment, informed consent prac-
tices have received considerably less attention
than psychological treatment and research activ-
ities. The goal of this paper is to characterize the
role of informed consent in neuropsychological
practice and to provide a proposed framework
for its conveyance.
ORIGINS OF INFORMED CONSENT
Prior to the mid 1900s in America true informed
consent was nonexistent; aphysician was simply
required to obtain patient permission prior to
executing a “surgical procedure” and by law
there was no explicit obligation to disclose pos-
sible risks (Mazur, 1986). In 1914, a New York
Court of Appeals stated in Schloendorff v. Soci-
ety of New York Hospital (1914) that “every
human being of adult years and sound mind has
a right to determine what shall be done with his
own body; and a surgeon who performs an oper-

* Address correspondence to: Doug Johnson-Greene, Department of Physical Medicine and Rehabilitation, Johns
Hopkins University School of Medicine, Good Samaritan P.O.R. Suite 406, 5601 Lock Raven Blvd., Baltimore,
MD 21239, USA.
Accepted for publications: February 12, 1997.
 INFORMED CONSENT IN NEUROPSYCHOLOGY
ation without his patient’s consent commits an
assault, for which he is liable in damages”. In
the 1950s and beyond, failure to obtain consent
was viewed as negligence rather than assault
arising from unwanted touching. The basis of
informed consent can be found in Salgo v.
Leland Stanford Jr. University Board of Trus-
tees (1957), which held that a physician has a
legal duty to provide a “full disclosure of facts
necessary to an informed consent.” In the land-
mark medical cases of Natanson v. Klien (1 960)
and Mitchell v. Robinson (1 962), the courts up-
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held the Salgo standard stating that a patient’s
mere consent was inadequate and that a physi-
cian must procure the patient’s informed consent
prior to medical treatment by providing disclo-
sures regarding treatments and procedures (Mei-
sel, 1979). Specifically, patients have the right
to be informed fully prior to their participation
as to procedures, untoward effects, and possible
consequences of their consent. Failure to pro-
vide such disclosures renders a physician liable
for the harm resulting from the treatment, even
if the physician was not negligent in performing
the procedure. In this case the plaintiff suc-
ceeded in a medical malpractice action against
the defendant physician. There was no finding
of negligence in how the physician performed
the procedure, but liability was levied on the
grounds that the physician failed to fully dis-
close the material risks of the procedure at issue.
Id. at 393; 350 P. 2d at 1093. With regard to the
physician’s duty, the court stated that, “[tlhe
physician has an obligation to make a full and
frank disclosure to the patient of all pertinent
facts related to his illness.” Id. at 404; 350 P. 2d
at 1 1010-2. Current standards uphold a patient’s
right to be given information consistent with
what a “reasonable man” would want to know
prior to providing consent (Mazur, 1986; Rose,
1986). The common thread implicit in all legal
precedents is the ability to govern the integrity
of one’s body (Faden & Beauchamp, 1986).
The adoption of a philosophy of informed
consent procedures has evolved only recently
within the field of psychology. The development
of informed consent in psychology has in many
ways paralleled its use in the medical commu-
nity. Issues surrounding informed consent be-
455
came most apparent in psychology following
several highly publicized research studies (i.e,
Milgram’s study of obedience; Milgram, 1963;
Zimbardo’ s prison study on de-individuation;
Zimbardo, 1969) in which participants were sub-
jected to unpleasant and deceptive procedures
without an opportunity to make an informed de-
cision to participate (Kelman, 1967). Several
years later the National Committee for the Pro-
tection of Human Subjects of Biomedical and
Behavioral Research established rigorous guide-
lines for professional conduct of research, which
have since been revised several times to reflect
more liberal criteria. Institutional review boards
and an ever changing ethics code have sensitized
psychology researchers to the rights of research
participants, including the right to informed con-
sent. However, research venues continue to ex-
empt most paper and pencil psychological tests
from written informed consent requirements by
institutional review boards. It should be noted
that the medical community is not without ex-
amples of research conducted in the absence of
informed consent (e.g., Alabama prison studies
of syphilis; Curran, 1973; Jones, 1981), which
has undoubtedly contributed to heightened
awareness of informed consent issues.
More recently, issues of informed consent in
psychology research have been extended to
one’s competency to consent. For example, nu-
merous articles have outlined ethical dilemmas
associated with conducting research with the
elderly (Franzi, Orgren, & Rozance, 1995; Mar-
son, Cody, Ingram, & Harrell, 1995a,b; Which-
man & Sandler, 1995) and with psychiatric pa-
tients (Macklin, 1982). Psychological treatment
and assessment have received comparatively
less attention than research in terms of informed
consent doctrine, and papers addressing in-
formed consent in neuropsychological assess-
ment are virtually nonexistent.
INFORMED CONSENT IN NEURO-
PSYCHOLOGICAL ASSESSMENT
Informed consent presupposes that a person is
given an accurate perception of the risks, bene-
fits, and possible outcomes associated with a
 456 DOUG JOHNSON-GREENE ET AL.
-
procedure or treatment prior to providing con-
sent. The Ethical Principles of Psychologists
(American Psychological Association, 1981)
states in Principle 8 (i.e., section a; Assessment
Techniques), that "psychologists respect the
right of clients to have full explanations of the
nature and purpose of the techniques in language
the clients can understand." A version of this
statement is also found in the current Ethical
Principles of Psychologists and Code of Con-
duct (American Psychological Association,
1992) in section 1.07; "When psychologists pro-
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vide assessment ...to an individual or group, or
an organization, they provide, using language
that is reasonably understandable to the recipient
of those services, appropriate information be-
forehand about the nature of such services and
appropriate information later about results and
conclusions." The current ethical standards ap-
pear to make a distinction between assessment
procedures (i.e., nature of the services) and
guidelines for providing assessment results (sec-
tion 2.09). It can be argued that the current ethi-
cal guidelines pertaining to informed consent to
therapy (section 4.02), are also applicable to
assessment in that psychologists are encouraged
to "obtain informed consent to therapy or
related procedures ....." Unfortunately, in-
formed consent as it relates to assessment is not
explicitly stated in the same manner as the
guidelines that govern psychological research
(section 6.1 1 ) and treatment (section 4.02). One
interpretation of these statements is that in-
formed consent should be obtained from clients
prior to initiation of assessment procedures,
though this is not explicitly stated.
Presumably, one can include neuropsycholog-
ical evaluation within the rubric of assessment.
By extension, then, a clinician would be
expected to provide full disclosure for neuropsy-
chological procedures. However, in a recent arti-
cle outlining ethical recommendations for the
conduct of neuropsychological assessment prac-
tices, Binder and Thompson state that "the cur-
rent Ethics Code, while requiring informed con-
sent for treatment and related procedures, does
not require the patient to give informed consent
for assessment." These excerpts from the Ethics
Code as well as the comments by Binder and
Thompson (1994) underscore the lack of clarity
surrounding current standards for ethical prac-
tice in obtaining informed consent for psycho-
logical assessment procedures.
It should be noted that Canada, a country
which offers psychological services comparable
to those found in the United States, requires that
informed consent be obtainedfor all psychologi-
cal services including neuropsychological evalu-
ation. The Canadian Code of Ethics for Psychol-
ogists (Canadian Psychological Association,
1991) states that a psychologist needs to "Ob-
tain informed consent ...for any psychological
services provided."
ISSUES AND DILEMMAS
One dilemma surrounding the achievement of
informed consent is that i t may actually
interefere with the validity of the assessment
process. Some patients receiving neuropsycho-
logical evaluations may be less disclosing about
psychosocial variables, premorbid history, and
perceived cognitive deficits. Alternatively, they
could refuse to participate in the assessment if
they were made aware of the potential ramifica-
tions of their participation. Binder and Thomp-
son (1994) highlight the potential irony of situa-
tions in which some patients would "choose not
to undergo a neuropsychological evaluation if
they fully understood that an abnormal result
could jeopardize their normal perogatives to
make important decisions." Obviously, such
statements may have validity but are also con-
trary to our goal of promoting patient autonomy
and self-determination.
There are several potential undesirable out-
comes, from the perspective of the patient, that
may occur as a result of neuropsychological
evaluation. For example, it is presumed that the
information obtained from a neuropsychological
evaluation is confidential. However, this infor-
mation could be disclosed against the wishes of
the patient, usually as a result of legal mandate.
The ethical injunction to avoid harm is, at times,
in opposition with the ambiguities pertaining to
issues of confidentiality in neuropsychological
assessment. Once neuropsychological test re-
 INFORMED CONSENT IN NEUROPSYCHOLOGY
sults are disclosed, whether requested specifi-
cally by the patient or as a function of legal
transactions, this information may affect
adversely an individual’s rights by denying priv-
ileges or freedoms that were previously enjoyed.
For example, in Oregon there are mandatory
reporting requirements which require a health
care provider to notify the state Department of
Motor Vehicles when a patient has a dementing
illness that would interfere with the ability to
operate a motor vehicle. In such an instance, the
right of the patient’s confidentiality must be
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weighed against the social responsibility of the
clinician to protect the welfare of both the pa-
tient and the public at large. Ironically, few pa-
tients would probably consent to neuropsycho-
logical evaluation if they were aware prior to the
evaluation that the neuropsychologist may be
required by law to report positive findings of
significant cognitive impairment resulting in an
inability to safely operate an automobile to a
State Department of Motor Vehicles.
Results of neuropsychological evaluations
can also be subpoenaed and become part of a
variety of legal proceedings to the patient’s det-
riment, regardless of the intended purpose of the
evaluation. Some examples of legal proceedings
might include cases involving guardianship or
conservatorship, financial compensation for in-
juries and illnesses, matters of child custody, or
other cases in which the cognitive status of the
patient is in question and may influence the out-
come of the proceeding. For example, results of
a patient’s neuropsychological evaluation con-
ducted as part of a routine consultation for pos-
sible dementia could be obtained by subpeona
and subsequently used in a legal proceeding in
which a relative has brought a suit to obtain con-
trol of the patient’s finances on the basis of di-
minished cognitive capacity. Principal B of the
ethical guidelines concerning Integrity also ap-
pears to be applicable here to the extent that psy-
chologists have an obligation to the extent feasi-
ble “....to clarify for relevent parties the roles
they are performing....”.
Surprisingly, there are no known legal prece-
dents in case law to date in any jurisdiction per-
taining to unintended, yet adverse outcomes as-
sociated with psychological assessment proce-
457
dures or improper use of psychological data. It
is possible that if such issues have been raised
they have been decided at the court level, with
no attendant appeal. Because the decisions of
trial courts are not binding, they are not
published and, as a result, are not available for
review. Additionally, such issues generally
would be thought of in the legal community as
residing within the domain of breaches of confi-
dentiality and not within the scope of informed
consent deficiencies. Aside from the lack of le-
gal precedent in this arena it can be argued in
court that iatrogenic outcomes, such as labeling
a patient as “incompetent” on the basis of a
psychological evaluation, can have numerous
social, psychological, and legal implications
(Winick, 1995).
Competency to give consent is not an infre-
quent issue in psychological research and is in-
creasingly an issue in clinical neuropsychologi-
cal evaluations. Ironically, those patients who
are not competent to give consent are often the
most in need of the protection informed consent
provides. There are no universally accepted
guidelines that can be used to address clinical
decisions relating to competency to consent.
Indeed, the overwhelming majority of literature
in this area has favored commentary and opinion
over empirically validated decision models. This
assumes, of course, that a researcher could con-
duct empirical investigations of competency to
consent using patients who are themselves in-
competent. The standard of practice at present
appears to be a matter of securing consent from
guardians or relatives when the patient’s compe-
tency to consent is questionable. Also, the stan-
dard of competency tends to vary according to
the nature and perceived invasiveness of the
procedure. For example, a patient might be held
to a higher standard of competence to consent to
the amputation of a limb in comparison to con-
sent for a neuropsychological evaluation.
Some ethical commentators would argue that
psychological practices and treatments do not
fall under the purview of traditional notions of
informed consent. Traditionally, informed con-
sent is correlated with (a) invasiveness, (b) like-
lihood of serious risks, and (c) presence of dis-
comfort. Neuropsychological assessment does
 45 8 DOUG JOHNSON-GREENE ET AL.
not tend to rate highly on any of these parame-
ters, broadly construed, at least in comparison
with many medical procedures (Crowhurst &
Dobson, 1993). Admittedly, administration of a
memory test is not of the same invasive universe
as a new heart bypass procedure. From a histori-
cal perspective, consent was mandated to pre-
vent “unwanted touching”, which constitutes a
battery or, in some venues, criminal sexual mis-
conduct. Neuropsychological assessment does
not appear to be applicable in this regard, unless
one considers aspects of sensory perceptual ex-
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amination which require the clinician to touch
the patient. The “reasonable person” standard
appears to have more relevance to practices in-
digenous to psychology. That is, what would an
average “reasonable person” want to know
prior to consenting to neuropsychological evalu-
ation? Obviously, there are also ethical and
moral overtones to this standard. Another
maxim for consideration is the notion that pa-
tients need only provide assent and not consent
to psychological assessment. A patient’s lack of
opposition to neuropsychological assessment is
equivalent to assent for the procedure. A stan-
dard termed qui tacit consentiere (i.e., silence
gives assent) supports this argument and is
found in English common law extending back to
the 13th century. While this maxim is probably
used at times as a standard for consent to neuro-
psychological assessment, it is the authors’ con-
tention that this standard is not consistent with
the prevailing conceptualizations of informed
consent.
SUMMARY AND RECOMMENDATIONS
In summary, informed consent is a relatively
new concept in psychology whose origin can be
found in the medical professions. The most re-
cent ethical code provides relatively explicit
guidelines for informed consent in treatment and
research while the guidelines are less clearly
articulated for psychological assessment. Nu-
merous articles have been published concerning
informed consent for research and to a lesser
extent treatment. However, very little has been
written concerning informed consent for psycho-
-
logical or neuropsychological assessment. The
most recent manuscript addressing ethical issues
in neuropsychology (Binder & Thompson, 1994)
suggests that informed consent is not required
for assessment procedures. It can be argued,
though, that the right to informed consent lies
solely with the patient and not with the neuro-
psychologist conducting an evaluation. In the
medical community, this view was recently ex-
pressed by a court in Hawaii involving a medical
patient who was administered treatment without
being made aware of potential risks and alterna-
tives to treatment (Bussey, 1995).
The matter of what constitutes necessary and
sufficient informed consent is an issue for de-
bate itself. Clearly, it would not be pragmatic or
desirable to provide with a patient every possi-
ble undesirable scenario, no matter how remote,
that could result from a neuropsychological
evaluation. Rather, it is the recommendation of
the authors that an attempt be made to provide a
reasonable explanation as to the type and nature
of the procedures used, the purpose of the evalu-
ation, limits of confidentiality, and other signifi-
cant information as needed. Such disclosure
could be tailored to each specific situation de-
pending upon the specific reason for referral for
each patient. Further, it is recommended that
clinicians seek to clarify any confusing aspects
of the assessment process for the patient prior to
the start of the evaluation. A list of specific pro-
posed guidelines are presented in Table 1.
Informed consent represents, for some. a jux-
taposition between legal precedents and ethical
obligations (Segest, 1995). Legally, informed
consent provides a means by which liability can
be minimized. Ethically, informed consent rep-
resents a conscious effort to promote patient
autonomy and self-determination. From a legal
standpoint there is little or no basis for consent
in psychological practice, particularly within the
scope of one’s ability to maintain bodily integ-
rity. This assumes, of course, a separation be-
tween mind and body. Furthermore, neuropsy-
chological assessment does not routinely rate
highly along dimensions of invasiveness, proba-
bility of serious risks, and presence of discom-
fort. For this reason, informed consent in neuro-
psychological assessment is probably viewed by
 INFORMED CONSENT IN NEUROPSYCHOLOGY 459

Table 1. Recommendations for Providing Informed Consent to Patients Receiving Neuropsychological Evalua-
tions.

1. The patient should be provided with a basic description of the intended purpose of the evaluation from the
perspective of the neuropsychologist. Also, provide the name of the person(s) requesting the evaluation, if this
is someone other than the patient.
2. Discuss with the patient the procedures and measures to be used in terms that the patient can easily understand
and the estimated time for their completion.
3. Explain the limits of confidentiality (including the possibility of records disclosure due to court subpoena), as
well as the foreseeable uses of this information that can be reasonably expected given current available infor-
mation about the patient and their reason(s) for referral. Describe any special circumstances pertaining to
confidentiality (e.g., medicolegal assessments) or anticipated or lawfully required breeches of confidentiality
(e.g., DMV mandatory reporting requirements) that are applicable to the patient.
4. In instances in which assessment results will be placed into a medical record, provide information to the
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patient concerning the material to be placed in the records and where those records are kept.
5. Every effort should be made to explain the purpose of an evaluation in terms that can be easily understood. In
the event that a patient is unable to express an understanding of the purpose of the assessment, consent is
obtained, when possible, from a family member or legal representative. Informed consent should always be
obtained from guardians prior to assessment of minors.
6. Written documentation of informed consent outlining the aforementioned points should be obtained from the
patient or legal representative prior to evaluation.

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