Privacy, Disclosure and Discrimination

  • There are a variety of reasons why people may choose to tell others that they have hepatitis B, but fundamentally disclosure is their choice. People with chronic hepatitis B have a right to privacy in Australia. They are not required by law to disclose their hepatitis B to their families, their sexual partners, or to service providers such as dentists and Centrelink.

    There are THREE exceptions to this right to privacy:

  1. Some insurance policies, particularly life insurance, require that health conditions are disclosed. Not disclosing could impact on future claims
  2. Employees of the Australian Defense Force must disclose and/ or consent to testing
  3. Health Care Workers with hepatitis B must disclose their status to their employer, are they not permitted to perform exposure prone procedures (these are procedures that occur in body cavities or in difficult-to see parts of the body, and where there is potential for the hands to come into contact with sharp instruments).

In addition, people with hepatitis B are not permitted to give blood.

  • Different cultures have different understandings or assumptions about privacy. Some of these attitudes will relate to social norms within families where information is shared freely within families, and sometime within communities. The Victorian Privacy Commissioner noted that privacy is very important to the Chinese community, especially in relation to a person’s standing within the community and to their business dealings. The Vietnamese community is similarly protective of their family affairs because of the potential shame through others knowing their business. In the Arabic culture, traditionally, people will keep an open house, with visitors arriving unannounced. In these circumstances, individual privacy tends to take second place to the needs of the community or family. The experience within some cultural groups is one of experiencing discrimination and social ostracism as a result of political or social beliefs. It is important that workers not make assumptions about privacy
  • In some communities, hepatitis B may be seen as ‘family business’. The intergenerational nature of hepatitis B infection means that there is often more than one person in a family living with hepatitis B or liver disease.
  • In other communities, and for some individuals, hepatitis B may be seen as a shameful thing. Shame can lead to people being afraid of their illness, afraid to access health or support services, or afraid to talk about hepatitis B at all.
  • We know that experiences of stigma and discrimination can profoundly impact on physical and mental well being. We do not know enough about the extent or impact of discrimination and stigma for people with chronic hepatitis B.
  • The burden of chronic hepatitis B in Australia is borne by people born in high prevalence countries, and Indigenous Australians. Cultural sensitivities are paramount when talking about hepatitis B in Australia, and care must be taken to avoid further stigmatising groups that are already marginalised in Australia.