Informed consent is recognized as an integral part of responsible data practices by international development and humanitarian organizations.
Much debate, however, surrounds the nature of “consent” obtained, practical aspects of obtaining informed consent in different development and humanitarian contexts, and whether digital technologies increasingly used to collect, and share data allow meaningful “consent”.
Some even argue that “informed consent” is realistically impossible in humanitarian contexts like disaster relief, and with the pervasive sharing of digital data makes “informed” consent simply an illusion.
Informed consent: Why should we get it?
Notwithstanding the debate about improving and simplifying both consent forms and the consent process in general, informed consent is increasingly a legal requirement (for example Article 6(1) of the GDPR) and recognized as the right of data contributors under the data protection laws in many jurisdictions globally.
More importantly, informed consent is rooted in ethical standards, particularly the principle of respect for persons, which means recognizing individuals as “autonomous agents” who have the ability to make informed or considered choices and to determine if those choices are consistent with their interests.
This principle also sets the moral requirement to protect those with diminished autonomy, including those who are especially vulnerable to harm and whose ability to make free choices are restricted.
In the context of international development and humanitarian assistance, informed consent for data collection both reaffirms the commitment to upholding the dignity of individuals who are served and to “doing no harm” especially to the vulnerable, marginalized, and disenfranchised.
What should the informed consent process look like?
While no one approach is likely to fit all contexts, best practices and ethical principles support that the consent process should include (but not be limited to) these key elements, at a minimum:
- A statement that the individual is providing data voluntarily and that they can withdraw consent at anytime;
- A statement that declining to provide data now (or in the future) will not impact their ability to receive the services or humanitarian assistance delivered;
- A description of the purpose of data collection in language that is understandable to a lay person;
- Information on why and what types of data (for example, personal identifiers, financial details, photos, health status etc.) are being collected, described in simple understandable language, and whether they will be contacted again for collecting additional data; and
- Information on who data will be shared with (for example, when required contractually by the donor or legally by the host government), what types of data, and whether personal identifying information will be shared;
- Information on how long data will be stored, and whether/how data will be archived;
- A reasonable description of foreseeable benefits to the individual and/or their community;
- A reasonable description of potential harm to individuals/groups from loss of privacy and confidentiality and what steps are being taken to mitigate those risks.
Additional key considerations include providing information about rights to remove or correct data, the “right to be forgotten” and rights to redress, particularly in jurisdictions where individuals legally control access to their data such as the EU and others.
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