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Table 5 Participants levels of concern associated with sharing genomic data for health records with researchers

From: Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data management in Queensland, Australia

 

Total number of participants who responded N (%)

Of the participants who responded

Very concerned N (%)

Moderately concerned N (%)

Somewhat concerned N (%)

Slightly concerned N (%)

Not concerned N (%)

Insurance companies using my genomic data to discriminate against me

1454 (97.3)

1218 (83.8)

89 (6.1)

61 (4.2)

39 (2.7)

47 (3.2)

Marketing companies targeting me to sell me products

1455 (97.4)

1211 (83.2)

112 (7.7)

66 (4.5)

32 (2.2)

34 (2.3)

Employers using my genomic data to discriminate against me

1455 (97.4)

1174 (80.7)

92 (6.3)

65 (4.5)

29 (2.0)

95 (6.5)

My genomic data being made publicly available

1457 (97.5)

1026 (70.4)

153 (10.5)

118 (8.1)

86 (5.9)

74 (5.1)

Being labelled or stigmatised in some way

1454 (97.3)

932 (64.1)

136 (9.4)

114 (7.8)

84 (5.8)

188 (12.9)

Ethnic or racial discrimination

1447 (96.9)

912 (63.0)

107 (7.4)

97 (6.7)

62 (4.3)

269 (18.6)

Privacy of my personal details (e.g. name, date of birth, address)

1457 (97.5)

875 (60.0)

234 (16.1)

152 (10.4)

109 (7.5)

87 (6.0)

My genomic data being used for research without my permission

1455 (97.4)

684 (47.0)

259 (17.8)

174 (12.0)

147 (10.1)

191 (13.1)

Police using genomic databases with my details to investigate crimes

1453 (97.3)

554 (38.1)

162 (11.2)

167 (11.5)

161 (11.1)

409 (28.2)

Receiving information about my future health that has no treatment option

1455 (97.4)

521 (35.8)

232 (16.0)

224 (15.4)

174 (12.0)

304 (20.9)

My family finding out about my health results

1453 (97.3)

288 (19.8)

172 (11.8)

163 (11.2)

175 (12.0)

655 (45.1)

Upsetting my genetic relatives, because my genomic information is similar to theirs

1454 (97.3)

290 (19.9)

166 (11.4)

171 (11.8)

222 (15.3)

605 (41.6)

My genomic data being used by Queensland Health to improve services or diagnostic tests

1452 (97.2)

260 (17.9)

243 (16.7)

216 (14.9)

193 (13.3)

540 (37.2)