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Table 5 Below is a list of potential risks. According to you, what are the most important risks connected with disclosure of your personal or health information? (Please select three responses in priority order)

From: Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations

(n = 2013)

Number of people

% of responses

Your information being shared with third parties (companies or government agencies) without your consent

978

50%

Your information being used in different context from the ones where you disclosed it

915

47%

Your information being used without your knowledge

683

35%

Becoming the victim of discrimination (e.g. in job recruitment, being charged higher prices, not being able to access a service)

662

34%

Your online identity being used for fraudulent purposes

620

32%

Your information being used to send you unwanted commercial offers

407

21%

Becoming a victim of fraud

392

20%

Your personal information being stolen

348

18%

Your personal safety being at risk

314

16%

Your views and behaviours being misunderstood

177

9%

Your reputation being damaged

100

5%

Your personal information being lost

89

5%

I wouldn’t give the possibility to share my health data

28

1%

None

19

1%

Other

11

1%

  1. Several answers possible, so percentage does not total 100%