Identifying ethical issues in patient data handling

Establishing best practices

Mickie de Wet
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Source: GDPR Report, March 5th 2018, PrivSev Report Website: “Over 50% of UK Consumers will share data for rewards points”.

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Tech used in assisted care vs. self care

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Three Ethical Arguments
 Large number of societal benefits supercedes individual
interests.

 Laws and regulations provide enough guidance – no need to

worry if in compliance.

 If people freely agree, it is their responsibility and it is okay to

use their data.

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Counter Arguments

 Data can be de-anonymized, causing greater risk for the

individual.
 Aggregated data could lead to stigmatization of certain groups
of people.
 Laws and regulations can be skewed to the advantage of rich
and powerful lobbyists.
 Patients could lose trust in the healthcare system.

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The Datafication of Human Beings

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Best Practices
 Exercise vigilance and question algorithmic anomalies aggressively.

 Be aware of biases that can make their way into computer code.

 Vet all recommended websites and mobile applications thoroughly,

and blacklist the poor ones.

 Become actively involved in ongoing data ethics education initiatives.

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Best Practices

 Demand higher standards from developers, corporations and

government.

 Establish a human contact point to actively investigate and

deal with data ethics issues specifically.

 Draw up a data ethics charter for your institution, or even just

your department.

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Thank you!
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