Skip to main content

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%