Ethics
notes
December 2015
More than efficacy: Broader implications of
cognitive enhancement research
By Dr Cynthia Forlini
Modafinil, a prescription sleep cycle regulator, has been touted as an effective substance for the
cognitive enhancement of healthy individuals. For much of the last decade this claim has been made
on the basis of: (1) anecdotal evidence from enthusiasts who have experimented with this stimulant
to increase wakefulness and attention, often without a prescription [1] and (2) scant scientific data
criticised for its small, homogenous samples and laboratory tasks that are incongruent with the
cognitive load of daily life [2].
Dr Cynthia Forlini is an ARC DECRA Research Fellow at the University
of Queensland Centre for Clinical Research. Her research explores the
neuroethics issues in defining the boundaries between enhancement and
maintenance of cognitive performance. On one front, her ARC DECRA
project studies lay and academic attitudes toward caring for the ageing
mind, including the strategies older individuals (50 years +) employ to
keep mentally fit. On another front, Cynthia is interested in the attitudes,
prevalence of and motivations for the non-medical use of prescription
stimulants by university students for performance enhancement purposes.
Dr Cynthia Forlini
In a recently published systematic
review, Battleday and Brem responded
to the gap in efficacy data with
evidence that modafinil enhances
attention, executive functions
and learning in healthy non-sleep
deprived individuals, and this,
during complex assessments [3]. The
optimistic findings of this review will
surely reinvigorate enthusiasm for
modafinil as a broad spectrum
cognitive enhancer [4].
Indeed, the authors of the review
suggest that “with more protracted
and complex testing, more benefits
are being associated with modafinil
use […] modafinil may well deserve
the title of the first well-validated
pharmaceutical ‘nootropic’ agent” [3 p.15].
However, validation of efficacy may not
necessarily translate into the collective
and individual benefits that are
expected when healthy individuals use
modafinil to increase task enjoyment
and productivity [4].
As the ethics community is called
upon to review, oversee and engage
with studies on the efficacy of existing
and novel cognitive enhancers it is
useful to recall two of the assumptions
that motivate this line of research [5].
First, prevalence data from studies
on the non-medical use of stimulants
in university students are often used
to suggest widespread use and public
demand for cognitive enhancers.
Efficacy data would be necessary to
provide an evidence base for informed
decisions about cognitive enhancement
in academic, professional, public health,
and medical contexts.
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HRC Ethics Notes December 2015
(Continued from page 1)
However, prevalence data have
been criticised for lack of shared
methodology and for capturing broader
uses of stimulants such as recreation
and experimentation. Furthermore,
prevalence is a measure of distribution
of cognitive enhancement and not the
greater desire for it.
Second, it is assumed that ethical
reflection is contingent upon having an
answer to the question ‘does it work?’.
Treating efficacy data as a rate-limiting
step discounts the substantial ethical
and social issues raised by use of
cognitive enhancers. Concerns about
social justice (i.e., equitable distribution,
fairness in competitive environments)
and changes in social context (i.e.,
coercion to use cognitive enhancers,
the nature of human achievement) will
continue even if a medication such
as modafinil is found to be both safe
and efficacious in healthy individuals.
These concerns emerged even in
studies where researchers questioned
participants about their attitudes toward
a hypothetically safe and effective
cognitive enhancer [6]. Ethical reflection
on the social outcomes of cognitive
enhancement must progress as
fundamental social values may preclude
further investigation
of efficacy.
Current mechanisms offer little
guidance on how the ethics community
should assess research on enhancement
much less its possible future outcomes
[6]
. There are contradictory views as to
whether social outcomes of research
fall within the purview of research
ethics oversight at all [7]. However, the
knowledge sought and generated from
studies on the efficacy of existing or
novel cognitive enhancers is not valueneutral. It is guided by implicit scientific
and ethical assumptions of benefit and
the results can have consequences for
science, regulation, and social practices.
For this reason, in addition to assessing
scientific merit and research integrity
of enhancement studies, the ethics
community must “also understand why
References
[1] McMillen, A (2012). Building a better brain: Wired on
nootropics, in Rolling Stone Australia, p78–83.
[2] Lucke, J et al. (2011). Deflating the neuroenhancement
bubble. AJOB Neuroscience, 2(4): p38–43.
[3] Battleday, R M and A K Brem (2015). Modafinil for cognitive
neuroenhancement in healthy non-sleep-deprived subjects:
A systematic review. Eur Neuropsychopharmacol.
[4] Porsdam Mann, S and B J Sahakian (2015). The increasing
lifestyle use of modafinil by healthy people: safety and
ethical issues. Current Opinion in Behavioral Sciences, 4:
p136–141.
[5] Forlini, C et al. (2013). Navigating the enhancement
landscape. Ethical issues in research on cognitive enhancers
for healthy individuals. EMBO reports, 14(2): p123–8.
[6] Banjo, O C, R Nadler, and P B Reiner (2010). Physician
attitudes towards pharmacological cognitive enhancement:
safety concerns are paramount. PLoS One, 5(12): p.
e14322.
[7] Zimmerman, E and E Racine (2012). Ethical issues in the
translation of social neuroscience: A policy analysis of
current guidelines for public dialogue in human research.
Accountability in Research, 19: p27–46.
Ethics arrangements for health
and disability research
Upcoming meeting
dates
The National Ethics Advisory Committee (NEAC) has published
its summary of submissions from the consultation on crosssectoral ethics arrangements for health and disability research.
NEAC would like to thank everyone who provided feedback. The
summary is available online at http://neac.health.govt.nz/crosssectoral-ethics-arrangements-health-and-disability-researchsummary-submissions.
HRC Data Monitoring Core
Committee (HRC DMCC)
Aspects of the feedback received will directly inform NEAC’s
review of its Ethical Guidelines for Observational Studies and
Ethical Guidelines for Intervention Studies. This includes feedback
on peer review for scientific validity; audit and audit-related
activity; Māori and health research; and innovative practice.
NEAC will be consulting on the new guidelines in 2016.
In addition, NEAC is working with others, including the HRC
Ethics Committee, to identify practical and useful actions to
increase clarity in the research ethics landscape. This work will
inform NEAC’s advice to the Associate Minister of Health in
mid-2016 on how such issues may best be addressed.
2
it is justified (or not) from a broader
social point of view” [5 p.126]. A broader
approach to enhancement research
will be essential as proponents of
enhancement call for more studies on
the efficacy of existing and
novel substances.
Health Research Council of New Zealand
Te Kaunihera Rangahau Hauora o Aotearoa
13 and 14 April 2016
12 and 13 October 2016
HRC Ethics Committee
(HRC EC)
24 February 2016
18 May 2016
24 August 2016
16 November 2016
Please note that any submissions to the
HRC EC need to be sent to Lana Lon at
[email protected] three weeks before
the meeting.
HRC Ethics Notes December 2015
The ethics of online research
By Dr Fiona Gill
Since the mid-1990s, the Internet has become a normal adjunct to the offline social lives of many
(MacMillan & Morrison 2006). For social researchers, this development has been understood as a
significant advantage. A wealth of data has become immediately available, opening up populations
and research opportunities not constrained by geographic or temporal considerations. This has also
resulted in some new ethical challenges for researchers interested in examining online identities,
communities, or interactions.
Dr Fiona Gill is a senior
lecturer in the Department of
Sociology and Social Policy at
the University of Sydney. She
teaches extensively in research
methods, and has served on the
University Human Research
Ethics Committee for eight
years. Her research interests
are in research ethics, identity
construction, and performance
and gender.
Many of these challenges are
generated by the very nature of online
interactions and data, which differ
significantly from the data that existing
guidelines are designed to manage.
This data has three characteristics:
• Textual: the majority of interaction
online is text-based: all we know
about someone is how they reveal
themselves through the keyboard
(Zhao, Grasmuch and Martin
2008). While developments in
technology are making it possible
for individuals to communicate
online using cameras and
microphones, thus ‘revealing’
themselves in a similar way to an
in-person interaction, nonetheless
much interaction online is still textbased through the use of forums,
or through the use of avatars, in the
case of gaming or places such as
Second World.
• Interactive: data found online
is developed through ongoing
interactions with individuals which
is recorded (Featherstone 2000). It
is therefore not static and so any use
of the data for analysis needs to be
understood as not representative of
an individual’s views over time, but
rather as a temporal snapshot.
• Public: the strength of the Internet
is how it facilitates almost instant
public communication between
strangers. Data and interactions
are immediately accessible.
However, the extent to which it can
be understood as truly public is
ambiguous (Farrimond 2013).
These three features need to guide
the responses of both researchers
and ethics review committees when
assessing online research. Although
a multitude of ethical issues arise as
a result of these features, I will focus
on two: informed consent and the
protection of the identities of
those involved.
The textual nature of social data
online is one of its most attractive
features for researchers. It is recorded
in an accessible format, analysis
is facilitated, and research online
becomes an economic alternative to
other forms of research. However, the
potential the online world presented
for new forms of social interaction
and identity performance was quickly
understood. It was posited that online
identities would free individuals from
the structural constraints imposed on
relationships and individual identities
by factors such as gender, race, or age.
Instead, presented only as text on a
screen, individual identity would be
performed anonymously and assessed
objectively, and people would be free
to choose and create their selves (Zhao
et al. 2008). This, combined with the
‘online disinhibition effect’, whereby
people say things and behave in ways
online without the social restraints
in place offline, makes it difficult for
researchers to verify who (or what)
they are researching online
(Suler 2004).
Most researchers have come to accept
that, in order to work online, such
identities should be understood
as legitimate articulations of self
(Bruckman 2002; McMillan and
Morrison 2006). It is possible for
individuals to lie, but in terms of the
research, we need perhaps to accept
that the data remains valid. The
question boils down to whether we can
accept an individual who is presenting
themselves as able to give informed
consent as being able to do so. This
involves making an assessment of
the individual’s ability to understand
what is involved in the research and
to consent based on the narrative
presented online. One possible solution
is to assume that the identity being
presented, provided that it remains
consistent (in terms of language,
perspective etc.,) should be accepted
as real and that the person is able to
give informed consent. Alternatively,
one may infer informed consent, such
that after having been informed of
(Continued on page 4)
Health Research Council of New Zealand
Te Kaunihera Rangahau Hauora o Aotearoa
3
HRC Ethics Notes December 2015
(Continued from page 3)
the progress of the research, should
the individual in question continue to
interact with the researcher, consent
should be assumed.
This also leaves aside the actual process
of gaining consent (Farrimond 2013)
– how should researchers provide
information about the research?
Should the research be opt in or opt
out? Who should they ask, if anyone?
Many researchers prefer the opt out
method, where participants of, for
example an online forum, are directed
to information about the research.
It is then the responsibility of the
participants to let the researcher know
that they do not wish to be part of
the research and opt out. However,
from the perspective of some ethics
review committees, opting in is a more
ethical process because it involves the
positive affirmation of willingness to
participate; participants must actively
consent to being involved in the
research instead of passively accepting
it. This means that researchers
must be prepared to contact the
moderators of the site in question and
ask permission in the same way as
with other communities. At the very
least, the terms and conditions of the
community and website in question
must be read and understood. This
should be done even if the forum,
community, or identity is
ostensibly ‘public’.
This represents a sticking point
for many academics. After all, if
something is placed into the public
domain (or publicly online), it surely
is to be treated the same way as other
published material? Ethically, this
remains a grey area, in part because
of the development of these online
communities and the increasing
numbers of participants rejecting
the notion that what they say or do
is available for open analysis, even if
their community interactions are open
for anyone to see. Such a position,
often explicitly stated in the terms and
conditions of the website, should be
respected – just because something is
available, does not mean that it should
be used.
This, in part, is because of the
difficulties associated with ensuring
the identities of the participants are
protected. Unlike the transcribed
interview or the anonymous survey,
online data of this nature is vulnerable
to text searches, which will lead the
curious straight back to the research
participants. Furthermore, despite
the anonymous nature of many such
identities, many online presences have
close and easily connected aliases
both on and offline. It is possible to
identify a participant’s offline identity
through their online presence, thus
compromising their anonymity
(Bruckman 2002).
Other than violating their right
to privacy, this has a significant
implication. Because of the dynamic
nature of online interaction, and the
online disinhibition effect, it is possible
for a researcher to inadvertently cause
reputational and social harm to one
of their participants. Something typed
may reflect a perspective written in
the heat of the moment, or at a time
where one viewpoint was held, or may
be an example of the individual trolling
online, but the archival nature of some
online communities and that people
change or perform alternative identities
online, makes this a dangerous
situation. Although it may be argued
that such a danger is known and
knowingly taken by all individuals who
engage online, it nonetheless is not the
role of the researcher to make those
decisions for the participants.
References
Bruckman, A (2002). Studying the amateur artist: A perspective
on disguising data collected in human subjects’ research on the
Internet. Ethics and Information Technology, 4: 217–231.
Farrimond, H (2013). Doing Ethical Research, Palgrave
MacMillan: Basingstoke.
Featherstone, M (2000). Archiving cultures. British Journal of
Sociology, 51(1): 161–184.
McMillan, S J and Morrison, M (2006). Coming of age with
the Internet: A qualitative exploration of how the Internet has
become an integral part of young people’s lives. New media &
society 8 (1): 73–95.
Suler, J (2004). The Online Disinhibition Effect. Cyber
Psychology & Behaviour, 7(3): 321–326.
Zhao, Shanyuang, Grasmuch, Sheri and Martin, J (2008).
Identity construction on Facebook: Digital empowerment in
anchored relationships. Computers in Human Behaviour 24:
1816–1836.
About Ethics Notes
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