3. Human rights impacted by neurotechnology
Privacy models
When considering neural data, a privacy model
which places the onus on individuals to be
responsible for the protection of their data, and to
make informed decisions, is insufficient due to the
heightened importance of that information.
The Commission’s concern is predicated upon
several matters:
the ‘privacy paradox’
lack of competition/alternatives which are more
data secure
the illusion of choice
power imbalances.
The ‘privacy paradox’ refers to the phenomenon
that, despite understanding the privacy risks of
a product or service, those risks have no obvious
influence upon an individual’s behaviour.99 Namely,
individuals will still engage with privacy‑adverse
products and services even where they are
highly aware of the risks. Even though there will
be very few people who understand the privacy
risks associated with neurotechnology (given
its complexity and emerging penetration into
consumer markets), this does not mean that
those who do understand the risks and still utilise
neurotechnology do not care about their privacy.
For example a recent comprehensive survey
conducted by the OAIC found that 9 in 10 people have
a clear understanding of why it is important to protect
personal information.100 Yet only 32% said they feel
in control of their privacy, and half of those surveyed
believed that if they want to use a service, they have
no choice but to accept what the service does with
their data.101 This data serves to highlight that people
care about their privacy, but they feel unable to
appropriately protect it when using technology.
32% feel in control of their privacy
feel that you have no
what happens
50% choice
with your data
understand why it is important to
protect personal information
90%
Even when aware of privacy risks, and disapproving
of those risks, individuals are often unwilling (or
unable) to stop using appliances or services which
threaten their privacy.102
This reluctance, or inability, to avoid products or
services which threaten privacy may be partly the
result of ineffective competition. The Australian
Competition and Consumer Commission (ACCC)
considers that where there are few (or no)
comparable alternatives available, or consumers
feel compelled to use the service because their
social or work networks are using them, consumers
may feel compelled to accept undesirable terms of
use.103 These undesirable ‘take‑it‑or‑leave‑it’ terms
can involve the unwanted collection and use of
consumers’ data.104
Effective competition, in combination with effective
regulation of privacy and data collection, may
encourage organisations to compete based on
the level of privacy and data protection they offer.
This may become a catalyst for the introduction
and adoption of more privacy‑focused and
security‑focused business models that reflect
consumers’ data preferences, rather than the
preferences of large organisations.105
A lack of competition may leave individuals with
very little ability to ‘choose’ neurotechnology
services and products without risking privacy.
The traditional model of privacy regulation places
great emphasis on informed ‘choice’ as an effective
safeguard for data and privacy.106 However, the
privacy paradox and numerous behavioural studies
demonstrate that placing the onus on individuals to
protect their own data is insufficient.107
Such a model also does not acknowledge the
substantial power difference between large
companies and individual consumers – especially
where mental augmentation may vastly improve
quality of life for consumers or patients. Even where
an individual understands how their data will be
used, this power imbalance remains, as ‘one party
controls the design of applications and the other
must operate within that design’.108
Australian Human Rights Commission
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