Do you have to disclose your HIV status to an employer?

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Key points

  • There are only a very few jobs where there is an obligation to tell your employer that you have HIV.
  • While many employers will be understanding, you may still encounter stigma and discrimination at work.
  • In the UK, employers are not allowed to ask job applicants about their health before a job offer is made.
  • Employers are obliged to maintain the confidentiality of employees’ health information.

Making the decision whether or not to tell your employer you are living with HIV can be a difficult one. While many employers will be understanding and willing to make accommodations, you may still encounter stigma and discrimination in the workplace.

This factsheet outlines anti-discrimination legislation in the United Kingdom, but some of the information below may be helpful even if you live elsewhere.

Here are some important questions you could ask yourself before deciding if you want to disclose or not.

Does your employer need to know your HIV status?

In most instances, HIV will make no difference to your employability or affect your ability to do your job. Therefore, there are very few jobs where there is an obligation to tell your employer that you have HIV. According to the Equality Act, it is illegal to discriminate based on HIV status. The provisions of this act apply in England, Wales and Scotland, with similar protections in Northern Ireland under the Disability Discrimination Act.

Applying for a job: Under the Equality Act, potential employers and recruitment agencies are not allowed to ask questions about health during the application phase. This is prohibited in any form such as questionnaires, verbal questions during an interview or asking previous employers health-related questions. The main exception to this is if your health condition will somehow affect your ability to carry out essential functions of the job. This is rarely the case with HIV.

"Being HIV-positive does not stop you from working in professions where there is close human contact, such caring, teaching or hairdressing."

If an employer is asking unlawful health questions (i.e. questions not related to the essential functions of the job) prior to offering employment, you can report them to the Equality and Human Rights Commission who regulate compliance with the Equality Act. Further information on how to do this is provided at the bottom of this page.

Many employers ask job applicants to complete an equal-opportunity monitoring form as a standard part of the recruitment process. This will normally ask about a person’s ethnicity, gender, age, disability, etc. The intention should be for the employer to monitor how well they are performing in terms of equality, diversity and compliance with anti-discrimination legislation. The questionnaire is normally anonymous and analysed separately from other aspects of the job application. Completing the form is usually optional.

In the UK, healthcare workers who perform procedures that involve exposure to blood (such as surgeons, dentists and midwives) will need to have an HIV test before being allowed to work. They are allowed to work in these roles as long as certain conditions are met, such as maintaining an undetectable viral load and having regular clinical monitoring. Healthcare workers or trainees not performing exposure prone procedures should not be required to take an HIV test. Being HIV-positive or declining to take an HIV test should not affect their employment.

Another type of role that could be affected by HIV status is the armed forces, due to concerns about accessing medication consistently. This is the same for many health conditions such as diabetes. The Army, Royal Navy and Royal Air Force do not accept applications from people who are living with HIV. Their policy is that although you cannot join the military with HIV, if you are diagnosed after you have joined, you can remain in service but may be redeployed in a different role.

Being HIV-positive does not stop you from working in professions where there is close human contact, such as in the caring industry, working as a teacher or being a hairdresser, or where food preparation is involved.

Glossary

undetectable viral load

A level of viral load that is too low to be picked up by the particular viral load test being used or below an agreed threshold (such as 50 copies/ml or 200 copies/ml). An undetectable viral load is the first goal of antiretroviral therapy.

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

consent

A patient’s agreement to take a test or a treatment. In medical ethics, an adult who has mental capacity always has the right to refuse. 

diagnosis

The determination that a patient has a particular disease or condition, through evaluation of their medical history, clinical symptoms and/or laboratory test results.

disclosure

In HIV, refers to the act of telling another person that you have HIV. Many people find this term stigmatising as it suggests information which is normally kept secret. The terms ‘telling’ or ‘sharing’ are more neutral.

When applying for a job, it is also important to consider if the job requires international travel to countries that have restrictions on HIV-positive visitors. While this could affect your ability to do the job, it may be possible to make a ‘reasonable adjustment’ once you are employed. (See the next question for more on reasonable adjustments).

If there are gaps in your CV due to illness, you do not need to specify the cause of your illness during the job application process. When previous employers provide references, they should make no reference to health-related matters or the reasons for taking time off work.

Once you are employed: After an offer of employment has been made, your employer may ask you to provide health-related information or have a medical check. This is usually only done if this information is relevant to carrying out your work. You may use this as an opportunity to share your status but there is no obligation to do so. If you choose not to reveal your status on a health questionnaire, you can leave questions about HIV blank, but do not lie. Providing false information could be viewed as a breach of mutual trust if you later disclose your status or it is discovered.

If your employer insists that you provide this information, you can challenge this if you think it is not relevant to your employment. The Data Protection Act limits organisations to only collecting data they need to fulfil their specified purpose (in this case, assessing if you are fit to carry out your role). You can do this by putting your concerns in writing to your employer. If you are unhappy with their response, you can make a complaint to the Information Commissioner’s Office (ICO) through their website. Further information on how to do this is provided at the bottom of this page.

In order for reasonable adjustments to be made in accordance with the Equality Act, your employer would need to know your HIV status. (See the next question for more information on this).

If you choose to share your status, it is important to consider who needs to know. This may be your direct manager and the Human Resources department, and possibly an occupational health professional. It is advisable for you to disclose on a need-to-know basis. This information should remain confidential at all times. It should only be shared with your permission in instances where it is relevant to carrying out some aspect of your work.

Ultimately, the decision to disclose or not should be yours and there are only a few instances when your employer would need to know.

What are the possible advantages (or disadvantages) of disclosing to your employer?

According to the Equality Act, HIV is defined as a disability from the point of diagnosis. You do not need to view your HIV as a disability in order to be protected by this law.

The Equality Act protects employees who are HIV-positive from any discrimination at work related to their disability and requires the employer to make any reasonable adjustments. These are changes to the work you do or the physical environment that remove a substantial barrier that a person may experience as a result of their disability. You need to disclose your HIV status for reasonable adjustments to be made.

For people living with HIV, reasonable adjustments could include:

  • time off for clinic appointments
  • flexible working arrangements
  • taking medication at work

In the context of coronavirus, if you are at increased risk due to having a low CD4 count (below 200), not being on antiretroviral treatment or having other health conditions, your employer should grant you reasonable adjustments in response to COVID-19. These may include: allowing you to work from home, working in a role that minimises contact with the public, providing you with access to personal protective equipment, or any other measures that could protect your health.

Other possible advantages of sharing information about your health with your employer could include accounting for periods of sickness or temporary poor work performance.

However, many individuals do not talk about having HIV because they feel that it is a private matter, or that it does not have an impact on their working life. Fear of poor treatment at work or of breaches of confidentiality are also important reasons why people choose not to share their status in the workplace.

Factors that can affect your decision to share your status can include:

  • the sector you work in (public-sector employers are often perceived to be more supportive)
  • whether the nature of your work could give rise to unfounded fears of HIV transmission (this may affect you if you work in healthcare, teaching, care work or food preparation)
  • the general atmosphere at work (very tough, competitive or political environments may feel less supportive or safe)
  • how trustworthy you think your managers, human-resources staff or colleagues are
  • a strong, positive relationship with a particular manager or colleague
  • how secure your employment is
  • whether you already feel discriminated against (for example, on the basis of race)
  • your reputation at work (how well liked or respected you feel at work)
  • what your other options are if disclosure is not well received or is badly handled.

How do you tell your employer that you are living with HIV?

You should be in control of the disclosure process. This means that you get to decide when, where, how and to whom you will disclose. You may choose to share information about your health shortly after receiving an offer of employment in order to ensure that reasonable adjustments can be made. Alternatively, you may choose to talk about it after being in a job for some time or if your circumstances change (such as a change in medication or needing more time off work due to illness).

"Only your HR manager or direct manager needs to know."

When telling your employer that you are HIV-positive, sharing information about HIV treatment, transmission and what being undetectable means may be helpful. You could give them this factsheet and other pages from this website. 

If you are disclosing in order for reasonable adjustments to be made, only your HR manager or direct manager responsible for authorising the adjustments need know about your diagnosis.

It may also be possible to explain that there is an underlying medical condition which is covered by the protection of the Equality Act and which may require reasonable adjustments, without specifying HIV. Doctors sometimes call this ‘giving the prognosis not the diagnosis’; a GP or occupational-heath doctor may be able to provide supporting evidence without revealing that you are HIV-positive.

If your employer discloses your HIV status to other people without your permission, they are breaching your confidentiality rights outlined in the Data Protection Act.

What are some common myths about people living with HIV?

There is still a great deal of stigma directed towards those living with HIV. While many people are met with understanding and support, there is a chance that sharing information about your health could go badly.

This is often linked to outdated or limited knowledge about HIV. Some common myths about HIV could cause your employer to react badly:

  • All those living with HIV will eventually progress to AIDS and will therefore become a burden
  • You will need to take an excessive amount of time off work to manage your HIV
  • HIV can be spread through sharing items such as utensils
  • HIV can be spread through cuts, bites and so forth
  • There are many jobs people with HIV cannot do because they pose a risk to others
  • Most people living with HIV are promiscuous or irresponsible

In fact, the vast majority of people living in the UK with HIV are on successful antiretroviral treatment and their health is well-monitored. This leads to a suppression of the virus in their blood until it reaches undetectable levels. People with HIV who have an undetectable viral load are expected to live long, healthy lives. In addition, they cannot infect others through sexual contact.

HIV is not spread through sharing of personal items or through means such as saliva exchange or biting.

Currently in the UK, very few people living with HIV go on to develop AIDS or any AIDS-related complications.

While you may require reasonable adjustments, such as time off for medical appointments, this should not significantly affect your work performance in any way. It is also important to remember that are very few jobs where there is any risk of HIV transmission.

While sharing information about HIV may be helpful, it does not always work to prevent stigma and discrimination. It is important to remember your rights as a person living with HIV.

What are your rights as a person living with HIV?

You are protected by the laws mentioned above. Your employer should only treat you differently when it comes to ensuring that reasonable adjustments are made, but not in a manner that is discriminatory or unfairly biased.

Confidentiality regarding sensitive personal information, such as health-related information, is protected under the Data Protection Act. Your employer is responsible for having procedures in place to keep this information confidential. Information about your HIV-status can only be shared with a third party if it is necessary to do so, with your prior written consent. This would usually be the Human Resources department or a direct manager responsible for making reasonable adjustments. If any colleagues need to be told about your status in order for reasonable adjustments to be made, you need to consent to this sensitive information being shared.

In situations where there is an occupational-health service or a company doctor, confidential information that is held by them should not normally be shared with an individual’s line manager, even if the manager puts the occupational-health staff under pressure to do so.

However, people’s rights are not always respected. Not all employers, or potential employers, will always adhere to these laws. For instance, if you are offered a job prior to disclosure and that job offer is then taken away once you disclose, this would go against the Equality Act. Once employed, if you experience discrimination in the workplace, if your employer refuses to make reasonable adjustments or if your HIV status is shared without your consent, this also constitutes a violation of rights.

In these situations, it may be helpful to first have an informal conversation with your employer outlining why you believe you have been treated unfairly and how the employer could change their behaviour or attitudes towards you.

If this does not resolve the issue, you may choose to make a formal complaint. The National AIDS Trust have advice and information on their website about the rights of people living with HIV. If you need help writing the complaint, ask your local HIV support service for support. You can also contact the Advisory, Conciliation and Arbitration Service (Acas) or the Equality Advisory Support Service (EASS) to get advice and explore ways of settling the dispute.

If all other options are exhausted, you would need to consider a formal tribunal hearing. Taking your case to a tribunal hearing may be very demanding and you may also need to discuss your status more widely.

National AIDS Trust (NAT)

020 7814 6767

www.nat.org.uk

Acas (Advisory, Conciliation and Arbitration Service)

Helpline: 08457 47 47 47

www.acas.org.uk

Equality Advisory Support Service (EASS)

Helpline (England, Scotland and Wales): 0808 800 0082

www.equalityadvisoryservice.com

Equality and Human Rights Commission (EHRC)

England: 0845 604 6610

Scotland: 0845 604 5510

Wales: 0845 604 8810

www.equalityhumanrights.com

To report unlawful pre-employment health questions, complete the online reporting form.

In Northern Ireland, you can contact the Equality Commission for Northern Ireland.

028 90 890 890

www.equalityni.org

Information Commissioner’s Office (ICO)

www.ico.org.uk

You can make a complaint to the ICO here.

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Acknowledgements

Thanks to Rosalie Hayes (National AIDS Trust) for her help and advice.