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Profiling by organizations was also raised as an important issue under this theme. The potential for

discriminatory practices, such as differential pricing, was noted as posing a significant risk of harm to

individuals, particularly those in vulnerable groups.

Body as information

“My concern is whether they look at your medical history and reach conclusions. They

form an idea, a prejudice. You can be denied employment.”

-Focus group participant

“With respect to emerging technologies or services that may present risks to Canadians'

personal privacy, there was moderate, but widespread, concern about the following

possibilities:

81%: results of genetic testing being used for non-health related purposes (…)

70%: wearable computers that collect personal information from the wearer”

-

2014 Survey of Canadians on Privacy

This proposed priority area resonated more with stakeholders than it did with focus group participants,

though both agreed that body-related information requires special privacy protections because of its

sensitivity. Focus group participants had difficulty engaging with the topic and expressed a lack of first-hand

knowledge of the issues.

Stakeholders viewed this as an emerging issue that the OPC should get ahead of to help proactively build in

the appropriate privacy protections. Many stakeholders were very concerned with big data analytics being

applied to this very sensitive information. They felt that the big data approach to health, genetic and biometric

information has a high potential risk of harmful secondary uses ranging from marketing to insurance

applications to uses we have not yet conceived of. The consent model was seen to be weak in this context,

and it was suggested that appropriate uses of information may need to be legislated. Others saw the need for

enhanced transparency to make individuals better aware of what information was being collected, by whom,

and for what purposes. The privacy of vulnerable groups, such as those who are dependent on medical devices,

was seen as being most at risk. Security was also viewed as a significant concern due to the sensitivity of the

information and its attractiveness to criminals.

Finally, we were asked to recognize the benefits to individuals and society in our consideration of this theme.

Some expressed a need for more research and guidance on de-identification and anonymization to aid

researchers in harnessing the great value of this data in a privacy protective manner.