Disclosing HIV status at work

  • Disclosure allows an employee to request reasonable adjustments, but many employees consider it to be unnecessary and too risky.

  • Health questions should not be asked on pre-employment questionnaires.

  • Medical information disclosed to an employer or company doctor is usually subject to the law of confidentiality.

A study conducted in East London found that only 22% of HIV-positive employees had told their employer that they were HIV-positive. Levels of disclosure were substantially higher amongst white gay men (33%) than ethnic minority gay men (16%) and African heterosexual men and women (10%).

More gay men had disclosed to colleagues than their employer (44% of white gay men and 25% ethnic minority gay men had done so). However, only 10% of African heterosexuals had mentioned HIV to colleagues.1

Following on from this, NAT’s research project found that deciding whether and how to disclose was the issue that caused the most concern to employees with HIV.2

Respondents who had disclosed their HIV status were more likely to work in the public or not-for-profit sector than for private companies. Respondents who had disclosed were more likely to be taking HIV treatment, taking HIV treatment during working hours or feel that they showed some physical signs of living with HIV.

For over three-quarters of the HIV-positive men in this study (77%), the response to the disclosure of their HIV status at work was generally positive. Less than one in ten reported a negative response.

Pros and cons of disclosure

There can sometimes be advantages to disclosing HIV status. It can enable the employee to request reasonable adjustments under the anti-discrimination legislation. It could make it easier to:

  • request time off for clinic appointments, etc

  • request flexible working arrangements

  • take medication at work

  • account for temporary poor work performance

  • account for periods of sickness.

Many other individuals do not disclose because they feel that it is a private matter, or that it does not, in fact, have an impact on their working life. Fear of poor treatment at work or of breaches of confidentiality are also important reasons why individuals choose not to disclose.

Factors that can affect an individual’s decision to disclose or not can include:

  • the sector they work in (public-sector employers are often perceived to be more supportive)

  • whether the nature of the work could give rise to unfounded fears of HIV transmission (this particularly affects people working in health care, teaching, personal-care work or food preparation)

  • the general atmosphere at work (very tough, competitive or political environments may feel less supportive or safe)

  • how trustworthy managers, human-resources staff or colleagues are perceived to be

  • a strong, positive relationship with a particular manager or colleague

  • how secure the employment is

  • whether the employee already feels discriminated against (for example, on the basis of race)

  • the employee’s reputation at work (how well liked or respected they think they are)

  • what their other options are if a disclosure is not well received or is badly handled.2

Medical questionnaires

The Equality Act 2010 introduced for the first time a restriction on when employers can ask job applicants detailed questions about health or disability. Such questions should now only be asked after interview, once a job offer has been made.

This restriction was introduced as a direct result of lobbying by disability charities, including NAT and Terrence Higgins Trust. There was widespread suspicion that the use of such questionnaires led to discrimination against candidates who revealed their disability, although this was not always easy to prove. Now that only candidates with a provisional job offer can be asked to complete a health questionnaire, it will be easier to demonstrate discrimination should a job offer be withdrawn.

Employers should still ask job applicants if they would need any reasonable adjustments in order to take part in the job interview. This could be relevant for a person with mobility needs, a hearing impairment, etc.

They may also ask candidates about disability on an equal-opportunities monitoring form (see Equal opportunities monitoring forms below).

After a provisional job offer has been made (or later on in the employment), the employer may wish to assess the suitability of a job applicant, in terms of their health, for the job they have applied for. Certain jobs may require physical stamina, particular abilities that could be compromised by ill-health, or work in a hazardous environment.

If there is a genuine requirement, an employee could be turned down for a job on health-and-safety grounds. For example, a role may require the employee to drive safely, and a person unable to do so because of recurrent epilepsy may not be suitable for that job.

There are very few work roles in which HIV infection could be a reason not to employ someone. Although this is considered unjust by many, there is a ban on healthcare workers with HIV working in roles where they perform exposure-prone procedures, such as surgery. A job requiring travel to countries which restrict the entry of people with HIV could be another. There are some working environments where the risk of exposure to opportunistic infections such as tuberculosis could be a concern for an employee with HIV.3

Theoretically, an employer’s health questionnaire should only collect as much information as would be relevant to assess suitability for the job in question. It would be a breach of data-protection rules to collect personal information that is irrelevant or excessive.

The Faculty of Occupational Medicine’s ethical guidance states that: “Health screening, even by questionnaire, is an invasion of privacy and data protection principles require that information sought is adequate, relevant and not excessive in relation to the purpose and used only for the declared purpose. The use of health assessment must be justified. Thus asking questions about matters that do not affect the outcome of the assessment process would not be justified.”4

The Data Protection Act 1998 sets out the principles for the collection and use of health information. The Information Commissioner’s Office is an official body which issues codes of practice on data privacy. They state that if employers wish to collect information on their workers’ health, they should be clear about why they are doing so and satisfied that the intrusion of privacy is justified by the benefits that result.5

Most questionnaires will ask about disability, and in particular ask the employee whether any reasonable adjustments would be desirable or necessary.

Although it is best practice for a health questionnaire only to be read by an occupational health professional, in many situations they may be seen by human resources staff.

When faced with a form that asks about HIV, individuals may prefer to speak in confidence to an appropriate member of staff, either in addition to, or as an alternative to, filling in a questionnaire. This gives an opportunity to explain in more detail how they are successfully managing their condition and be on hand to answer any questions, rather than rely on a form.6

It may also be possible to explain that there is an underlying medical condition which is covered by the protection of the DDA 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 concerning the employee’s health, on this basis.

Under the anti-discrimination legislation, employees are not required to disclose their disability at any specific moment. While reasonable adjustments can’t be made until the employer is aware of the disability, the employee can disclose this at any stage he or she chooses.

Nonetheless, misleading information on a medical questionnaire could have consequences for the employment contract. If an employee incorrectly answered “no” to a question about HIV infection and this was subsequently discovered by the employer, it could constitute a breach of mutual trust, and so invalidate the employment contract.

Seven per cent of employers have dismissed an employee while in employment because they had given misleading health information.7 Nonetheless, in some cases, employers may leave themselves open to a challenge of direct disability discrimination in doing so.

It may be preferable to leave a question on a form blank than to answer “no”. As such, the employee is simply not answering, which means he or she is not disclosing, but isn’t misleading either. It may also be easier to disclose HIV at a later stage if the answer has been simply left blank.

Equal opportunities monitoring forms

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.

Employers must protect the confidentiality of information on monitoring forms.

It is lawful for employers to ask individuals to complete an equal-opportunities monitoring form when they make their initial job application, before a job offer is made.

Dishonesty on an equal-opportunities questionnaire would not have the same implications as dishonesty on a job-application form or a subsequent medical questionnaire. It does not form part of the employment contract.8

Medical examinations

Routine, generalised physical examinations or screening are not thought to be ethically justified without a defined objective.9 However, a medical examination may be requested in certain circumstances, for example to confirm that an employee is taking sick leave for a genuine reason, or to help identify what reasonable adjustments are needed.

Some employment contracts may include a clause which requires the employee to submit to a medical examination and agree to the release of medical information. If the contract does not do so, the employer cannot oblige the employee to be examined. Nonetheless, the employer may then make a decision based on the information it does have, and this may not always be to the employee’s advantage.

Medical reports

An employer can request a medical report from the employee’s doctor or from a company doctor, but only with the consent of the employee.

Under new General Medical Council ethical guidelines,10 introduced in 2009, doctors (including company doctors) should:

  • ensure that the employee understands the scope, purpose and likely consequences of a medical examination carried out on behalf of an employer

  • obtain the employee’s consent before disclosing information about him or her to the employer

  • offer to show a medical report (or provide a copy) to the employee before it is sent to the employer.

While the employee can refuse to allow a report to be sent, the employer may be informed that this is the case. The employer is likely to then act on whatever information is available and this may put the employee at a disadvantage.

In addition, the Access to Medical Reports Act 1988 gives individuals some specific rights in relation to medical reports about them which are prepared for employment purposes. This legislation only covers reports prepared by a medical practitioner responsible for the clinical care of the individual (not reports prepared by a doctor employed by the company).

Employers must notify employees in writing that they want to ask for a report, and cannot go ahead without the employee’s consent. The employee has the right to see the report, and request alterations or amendments before it’s sent. If the doctor doesn’t accept the need to make changes, the employee has the right to add his or her own comments before the report is supplied.

Confidentiality

As outlined in our chapter on the subject, the common law of confidentiality protects information which is shared within a confidential relationship, in other words, when it can be reasonably expected that privacy will be protected. Information that an employer holds about an employee, for example sensitive information about health, is therefore covered.

Also, under the Data Protection Act, all health records (including notes, reports and reasons for sickness and absence) are classified as sensitive personal data. The Information Commissioner notes that “workers can legitimately expect that they can keep their personal health information private and that employers will respect this privacy.”5

It’s recommended that employers should keep sickness records containing details of a worker’s illness or medical condition separate from other less sensitive information, for example a simple record of absence. This could be done by keeping the sickness record in a sealed envelope or in a password-protected computer file. In general, managers should not have access to this information unless they need it and can keep it confidential.5

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.

The Faculty of Occupational Medicine’s ethical guidelines make it clear that occupational-health staff, such as company doctors, must respect General Medical Council guidance on confidentiality. Moreover, “an occupational health clinical record is a confidential medical record to which all the principles of medical confidentiality apply.”11

The Information Commissioner states that only healthcare staff should have access to and be responsible for interpreting detailed medical information. “Managers should not have access to more information about a worker’s health than is necessary for them to carry out their management responsibilities. As far as possible the information should be confined to that necessary to establish fitness to work, rather than consist of more general medical details.”5

Other experts comment that “there is often no need for employers to know the diagnosis and, should it be necessary to divulge this, the patient/client will need to give written permission for the information to be released”.9 Managers and other people without a medical background may not have the necessary information to understand the implications of a person’s medical condition. This is especially the case for a stigmatised and misunderstood condition such as HIV infection.

References

  1. Elford J et al. Disclosure of HIV status: the role of ethnicity among people living with HIV in London. Journal of Acquired Immune Deficiency Syndrome 47: 514-521, 2008
  2. Douglas N I Just Get On With It: a study of the employment experiences of gay and bisexual men and black African men and women living with HIV in the UK. National AIDS Trust, London, 2009
  3. Gazzard B and Williams S Human Immunodeficiency Virus (HIV). in Fitness for Work: the medical aspects, 4th edition, ed. Palmer, Cox and Brown Oxford: OUP, 2007
  4. Faculty of Occupational Medicine Guidance on Ethics for Occupational Physicians. London, 2006
  5. Information Commissioners Office The Employment Practices Code. London, 2005
  6. National AIDS Trust HIV and Recruitment: advice for employers. Available online at: www.nat.org.uk/Media%20library/Files/PDF%20documents/Recruit-Employers.pdf, Date accessed 12 January 2012, 2010
  7. Chartered Institute of Personnel and Development Labour Market Outlook: quarterly survey report. Autumn, 2007
  8. National AIDS Trust HIV and Recruitment: advice for job applicants living with HIV. Available online at: www.nat.org.uk/Media%20library/Files/PDF%20documents/Recruit-Employees.pdf, Accessed 30 July 2010, 2010
  9. Lewis J, Thornbory G Employment Law and Occupational Health: a practical handbook. Oxford: Blackwell Publishing, 2006
  10. General Medical Council Confidentiality: disclosing information for insurance, employment and similar purposes. September, 2009
  11. Harling K and Hunt S (eds) Guidance on Ethics for Occupational Physicians 6th ed. London: Faculty of Occupational Medicine, 2006
This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.