Bad blood? Survey of public's views on unlinked anonymous testing of blood for HIV and other diseases

Participants, methods, and results

Three questions were inserted into the March 1998 Office for National Statistics omnibus survey. Of 3000 addresses selected from the postal address file, 2635 were eligible. Face to face interviews were conducted with one randomly selected person aged 16 or over at 1845 of these addresses, a response rate of 70%. Interviews were preceded by a spoken explanation of unlinked anonymous testing of blood and its value to public health. All analyses were on weighted data.

Overall, 31.5% (95% confidence interval 29.3% to 33.7%) of participants were aware of unlinked anonymous testing of blood for HIV. Multiple logistic regression showed that awareness was strongly associated with age (P<0.001), being highest in the age group 25–44 (39%), decreasing to 19% in those aged 75 and over, and being lowest in the 16–24 age group (14%). Awareness was also significantly associated with age at leaving full time education (P=0.03) and to some extent with region (P=0.06). Awareness was highest in Wales (41%), where a promotional campaign had recently been run, and lowest in south west England (23%) (table).

Disagreement (those disagreeing or strongly disagreeing on a five point scale) with unlinked anonymous testing of blood for HIV was 26.3% (95% confidence interval 24.3% to 28.4%). Multiple logistic regression showed that disagreement was strongly associated with age (P=0.004). It decreased from 31% in those aged 16–24 to 17% in those aged 75 and over. Disagreement was significantly associated with region (P=0.02), being highest in the Midlands (32%) and lowest in south east England (19%), and was also associated with age at leaving education (P=0.06) (table). Disagreement was significantly higher in respondents who were unaware of the policy (30.8%) than in those who were aware (16.7%) (P<0.001).

The final question, about disagreement with unlinked anonymous testing of blood for other usually fatal diseases, provided results broadly similar to those for HIV.

Comment

Most respondents were unaware of unlinked anonymous testing of blood for HIV, and a substantial minority disagreed with such testing both for HIV and for other usually fatal diseases. If the British government is serious about its commitment to “rebuild confidence in the NHS as a public service, accountable to patients, open to the public and shaped by their views,”3 then the policy needs reconsideration.

Failure to gain explicit consent was originally justified by the public health emergency of HIV.4 The ethical debate, however, has shifted with time. The HIV epidemic has not materialised as expected, and the balance between the social usefulness of the programme and the individual's right to determine what happens to his or her blood has changed.2

Notification of testing currently relies on patients seeing posters or leaflets. Instead, all patients should be given explanatory information sheets in settings where unlinked anonymous testing for HIV or hepatitis C virus is going on, with the opportunity for discussion and opting out. Given that disagreement with the policy was highest in those who were unaware of it, promoting openness may even engage the public and encourage greater social responsibility.5