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Design+ Meaningful digital consent: A VSD study

Rooted in the principles of the Belmont Report and (iii) Allow individuals to control the level of detail they
the Fadden and Beauchamp bioethics texts, Friedman get and when: Information must be provided to
et al.’s seminal VSD work defines informed consent individuals in manageable and easily accessible ways
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as a value, consisting of a six-dimension process of (potentially including layers), and individuals should
“informing” (disclosure, comprehension) and “consenting” be able to control how much more detail they wish to
(voluntariness, competence, agreement, and minimal obtain and when.
distraction). 22,23 The concept of “informed” encompasses (iv) Be innovative and creative: Organizations should
disclosure and comprehension. Disclosure refers to the design and adopt innovative processes that leverage
provision of accurate, explicit information about the the interactive and innovative user experience and
benefits and harms of a service and the data management user interface approaches.
practices of the vendor. Comprehension refers to how an (v) Consider the consumer’s perspective: Organizations
individual interprets the information. This conceptual must take the consumer’s perspective into account to
investigation expands the original definition to include ensure that it is user-friendly and that the information
how the information is presented in the notice or to the is generally understandable and customized to their
individual. This expansion is based on Friedman et al.’s target audience, including vulnerable populations.
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discussion of the role of cues in in-person interaction as (vi) Make consent a dynamic and ongoing process:
an aspect of interpretation and the ANT-based assumption Informed consent is an ongoing process that changes
that the notice is a direct stakeholder. as circumstances change; organizations should not rely
The concept of “consent” encompasses voluntariness, on a static moment in time but rather treat consent as
competence, and agreement. Voluntariness refers to the a dynamic and interactive process.
ability to make a choice without coercion or manipulation, (vii) Provide individuals with clear options to say “yes” or
while competence requires the individual to have the “no”: Provide clear options of “yes” or “no.” Choices
physical, mental, and emotional capabilities to make the must be explained clearly and be accessible regardless
choice. Agreement refers to the need for there to be a clear of an opt-in/opt-out approach; otherwise, it is a
choice. A sixth dimension of minimal distraction was added condition of service.
in a later conceptualization, where the first five dimensions The OPC guidelines were used as a framework to identify
should be met without diverting the user from the task of four values for the conceptual investigation: honesty,
being informed or consenting. 24 helpfulness, universal usability, and privacy (Figure 1).

Meaningful consent is an essential element of the Personal These values complement the six dimensions of informed
Information Protection and Electronic Documentations consent to conceptualize meaningful consent, where there
Act (PIPEDA)—the federal privacy legislation for private- should be honest disclosure, helpful comprehension,
sector organizations in Canada. PIPEDA serves as the universal usability considerations with competence, and
foundation for provincial health privacy legislation, enablement of privacy through voluntary agreement.
where applicable (e.g., if deemed substantially similar). Honesty has been described as “orientation toward the
Meaningful consent focuses on the comprehension aspect, truth (authentic) and honest self-representation (absence
where people must understand what they are consenting of manipulation).” 27(p153) This value was selected to represent
to. The Office of the Privacy Commissioner of Canada’s the disclosure and minimal distraction dimensions, where
Meaningful Consent Guidelines (OPC guidelines) 25,26 were information should be communicated in an authentic
used to expand upon the six informed consent dimensions and non-manipulative way. The OPC guidelines suggest
by adding values. The guidelines are: that organizations should emphasize key elements and be
(i) Be accountable and stand ready to demonstrate accountable.
compliance; Organizations should be in a position to
demonstrate compliance with the consent obligations Helpfulness can be defined as “extending a hand to
by ensuring meaningful consent (e.g., not buried in someone devoid of expectancy in return, utilizing available
the notice). power and resources for the welfare of others, helping
(ii) Emphasize key elements: Organizations must allow individuals with their adversities, to shoulder their burden
individuals to quickly review key elements impacting sharing responsibilities, and heartily smoothing out one’s
their privacy decisions upfront by placing additional problems without causing a sense of discomfort.” 28(p107)
emphasis on what information is collected; who has The OPC guidelines focus on helping people comprehend
access to the information; for what purposes is the by improving interactions between users and privacy
information collected, used, or disclosed; risk of harm notices. This should occur by emphasizing key elements
and other consequences. and allowing for control of details through innovative

Volume 2 Issue 2 (2025) 3 doi: 10.36922/dp.8158