HIV testing: the danger of keeping secrets

Helen McElveen

doi:10.3399/bjgp13X665279

How has stigma and lack of trust been allowed to overshadow information sharing and comprehensive clinical care within the NHS?

Results of HIV tests performed by sexual health services are not routinely communicated to primary care. The rationale for this is to protect patient confidentiality and encourage people to attend for testing if they feel they may be at risk. I find this disquieting on several levels. GPs deal with huge amounts of sensitive data regarding all aspects of their patients’ lives. All members of the primary healthcare team, who may indeed be local people, are bound by the rules of confidentiality. To actively withhold key medical information makes it impossible, and potentially dangerous, for the GP and their team to provide structured, holistic health care to patients who have not disclosed their positive HIV status.

In today’s culture, we are encouraged to apply the ethical principles of beneficence, non-maleficence, autonomy, and justice to communication and decision making. This has led to a shift from paternalism towards open discussion of difficult subjects and shared decision making. Doctors and patients alike have welcomed the mutual responsibility. I cannot understand why, despite massive changes in the treatment and prognosis of HIV infection over the past 30 years, the stigma associated with the condition in the 1980s is being propagated by this culture of secrecy.

The issue has nothing to do with protecting healthcare staff from blood borne viruses. Around one-quarter of people with HIV in the UK are undiagnosed and every staff member at risk of exposure to blood borne viruses has a responsibility to use personal protective equipment. But it does have to do with protecting patients: people with a lifelong multisystem disease requiring treatment with a combination of drugs, each with their own profile of side-effects and interactions.

With around 100 000 people with HIV living in the UK and over 6000 new HIV diagnoses in the country in 2011, this is rapidly becoming a significant issue. It seems we are clinging on to the values of The Medical Society for the Study of Venereal Diseases (established 1922), rather than embracing The British Society for Sexual Health and HIV’s current objective: ‘To advance public health so far as it is affected by sexually transmitted diseases and to promote and encourage the study of the public aspects of sexually transmitted diseases ...’1

Surely it’s time we changed this standard practice in order to protect the best interests of the patient?