Consent to HIV tests and treatment

  • A competent adult has the right to refuse medical testing or treatment for any reason.

  • Doctors should discuss treatment options in understandable terms and respect their patient’s choices.

  • Specific issues arise in relation to children, young people under the age of 18, pregnant women and adults without full mental capacity.

The information here applies to England and Wales. Different laws and guidelines may apply in Scotland and Northern Ireland.

There are many reasons why a person might be reluctant to have a test or treatment for HIV. An individual may simply feel they are not at risk. A positive diagnosis can affect personal relationships, have financial implications or can lead to discrimination and isolation. Some people with HIV or AIDS decide not to start or to carry on with treatment. In clinical studies, people refusing to have antiretroviral treatment (ART) have cited various factors: quality of life, side-effects, the risk of developing resistance to the drugs, believing they do not need ART or having a preference for complementary and alternative medicine.1,2

Under common law, a competent adult has the right to refuse medical testing or treatment for any reason – or for no reason at all.  This right to individual autonomy is well established, even in cases where medical experts believe treatment has clear or lifesaving benefits.3  

Autonomy, privacy (including the right to physical integrity) and protection against physical abuse are also human rights protected under treaties such as the International Covenant on Civil and Political Rights (ICCPR) and the European Convention on Human Rights (ECHR). Freedom of religion is another human right that can come into play for some people when they make choices about medical treatment (such as a Jehovah's Witness refusing blood transfusions). In terms of domestic law, these freedoms are protected under the Human Rights Act 1998 as well as through pre-existing common law.4

In theory, a health professional carrying out tests or treatment without consent could face a criminal charge of battery, although in fact this is unlikely. A civil claim for battery or of negligence, however, could result.3

Obtaining informed consent for any test or treatment is also a fundamental principle of medical ethics and good practice. Guidance from the General Medical Council5 advises doctors to discuss treatment options in understandable terms and to respect the individual’s right to make choices about their care. Seeking informed consent should be seen as part of a decision-making process in which doctor and patient are partners.

Definition of consent

When carrying out tests or giving treatment, in order to act legally the doctor must ensure one of three conditions are met:

  • The patient has given consent or
  • Another person authorised to act as the patient’s representative has given consent (for example, a child’s parent or a person granted lasting power6) or
  • Treatment that is in the best interests of the person is urgently needed, without time to obtain consent.3

Consent for medical tests and treatment must be:

  • Granted by an adult or young person who has the mental capacity to make such a decision.
  • Voluntary and not given under duress.
  • Based on an understanding of the potential risks and benefits (‘informed consent’).7

Consent does not necessarily have to be written. Indeed, clinical guidelines on HIV testing discourage this as it may cause people undue anxiety.8 However, oral consent should be documented in the patient’s medical notes.

There is one situation in which blood may be tested for HIV without the patient’s knowledge or consent. Blood samples are sometimes tested as part of a public health programmes such as monitoring HIV prevalence across the population.9 The samples are anonymised and the results cannot be connected to an individual.  Blood samples from sexual health clinics and maternity units are two sources for this surveillance programme.10 

Is HIV/AIDS a special case?

In the past, testing for HIV was preceded by lengthy counselling about the implications of a positive diagnosis or even the effect of simply taking the test.  Doctors took extra care because, before the introduction of effective treatment, HIV was usually a terminal diagnosis. There was more discrimination and fewer legal protections than at present. Therefore, much emphasis was placed on gaining explicit and thoroughly informed consent to perform the test.11,12

HIV clinicians now argue that HIV testing should be presented as a routine procedure, to remove social barriers and stigma.12 The latest clinical guidelines on HIV testing stress that obtaining consent for an HIV test is well within the competence of any qualified health professional.8 

Testing is becoming routine in many common clinical situations:

  • All pregnant women should be offered a test for HIV.13  
  • The test is also offered routinely to all patients attending a sexual health or abortion clinic.8 
  • In areas of the country where HIV prevalence is relatively high, it is recommended that the test should be offered to all adults when they register with a GP or are admitted to hospital.8

At other times, healthcare professionals will offer an HIV test if the individual’s social or clinical picture suggests the person might be at risk. Some examples include men who have sex with men, people whose partners are known to be HIV-positive, people with tuberculosis, and people with unexplained weight loss.8 

The rest of this chapter provides information on consent to testing and treatment in more challenging scenarios, including:

  • Adults without full mental capacity.
  • Pregnant women who refuse interventions.
  • Children and young people under the age of 18.

The chapter ends with a list of organisations that can provide more detailed information and advice.

Adults without mental capacity

Sometimes, a clinician may think that a person needs a medical test or treatment, but the individual may not be able to make the decision for themselves. Some situations where this might apply include when the person has dementia (which can sometimes occur as a consequence of AIDS)14 or is unconscious.

In England and Wales, these situations are governed by the Mental Capacity Act 2005. In such cases, all decisions must be based on the best interests of the person being tested.6,15

The person must be helped to make the decision for themselves, if at all possible.

If the incapacity is temporary (for example, the person may regain consciousness), tests or treatment should be postponed until the individual is once again able to decide for themselves, unless there is an urgent clinical need for the intervention.8

If the condition is permanent and another individual has been granted power of attorney for the person’s health and welfare, they can make the decision. Unless they have lasting power of attorney, the next of kin do not have the power to give consent to medical treatment.7 Clinicians may however ask next of kin about the patient’s likely preferences and wishes, so that they may understand what would be in their best interests. Physicians should also follow any wishes expressed in a valid and applicable advance decision, if the patient has recorded one.

According to national guidelines on HIV testing: “If the patient has not appointed an attorney nor left a valid advance statement, HIV testing may be undertaken where this is in the best interests of the patient.”8

Occupational exposure and healthcare workers

As described above, if a healthcare worker has had a needlestick injury, there may be an urgent need to test the blood of the source patient. However, if the patient is incapacitated (for example, unconscious) the legal position is very unclear at present. The General Medical Council advises doctors that “current law does not permit testing the infection status of an incapacitated patient solely for the benefit of a healthcare worker involved in the patient's care.”16 The GMC and national guidelines for HIV testing advise doctors to seek legal advice before acting in these circumstances. Nonetheless a recent survey revealed that the testing of unconscious patients without their consent was commonly reported by doctors working in intensive care units.17

Moreover, it is not acceptable to seek consent for an HIV test prior to surgery, purely to reduce the potential risk to healthcare workers. The test must be offered only if it is considered to be of clinical benefit to the patient.18

When a person has died and there has been a potential occupational exposure to HIV (for example, in a mortuary worker) consent must be sought from the deceased’s nominated representative or next of kin before a test can be carried out.18

Pregnant women

Health professionals may face a dilemma if a pregnant woman decides against testing or treatment for HIV. While these interventions may have significant benefits for the child, the mother has every right to refuse them during pregnancy.

HIV can be passed from mother to child during pregnancy, birth and breastfeeding. Pregnant women are encouraged to have an HIV test because treatment and good obstetric management are very effective in preventing mother-to-child transmission. In the early 1990s, about 25% of pregnant women diagnosed with HIV passed the virus on to their babies. With improvements in detection and medical management, latest UK figures are closer to 1%.19

Offering the test universally is seen as an effective way to remove the stigma that might act as a barrier for some women. All women in England and Wales are offered an HIV test as part of their routine antenatal care and the majority agree to have it.19,13 

However, in law a pregnant woman retains her right to autonomy, even if her choices about medical care threaten the health or survival of the foetus. She may decline to have an HIV test, just as she may refuse any other medical procedure.4 She may also refuse treatment for HIV.

If the medical team have a reason to believe that the foetus may be at risk of HIV infection, they should continue to offer the test throughout pregnancy and attempt to address any fears the woman may have about accepting it. If an HIV-positive mother cannot be persuaded to accept any intervention to reduce the risk of mother-to-child transmission, clinical guidelines encourage the medical team to pursue the matter as a child protection issue so that the baby may be tested and treated at birth.20  

Children and young people under 18

The welfare of the child is a central principle of English law and is enshrined in the Children Act 1989.21  Under this act, parental responsibility includes giving consent to medical treatment on behalf of the child. In addition, children have human rights such as the right to life and the best possible health, and parents have the right to respect for private and family life.20 These rights may come into conflict when clinicians believe that a child should be tested or treated for HIV and a parent disagrees. The General Medical Council has produced guidance for doctors working with children and young people under the age of 18.22

Rationale for testing and treating children

As discussed in the section above, women who have HIV can transmit the virus to their children during pregnancy, birth and breastfeeding (‘vertical transmission’) and these are by far the most common routes of HIV infection in children. Rarely, children and young people may contract the virus through sexual abuse. Like adults, young people may be exposed through consensual sex or injecting drug use.23

Children can also go many years without symptoms but this does not mean the disease is not progressing, increasing their risk of HIV-related complications and death. Clinical guidelines are robust in recommending HIV testing for children likely to be at risk of infection, including those born to parents who are known to be HIV-positive.20

However, some parents remain reluctant to agree to testing for their child. Reasons might include:20

  • They do not feel that the child has been at risk.
  • Fear of disclosure – a diagnosis of HIV could have social and family implications, for example if the virus was passed on by a parent.
  • Feelings of guilt.
  • Psychological denial - an inability to accept or cope with the risk of HIV or a diagnosis in the parent and potentially the child.
  • Fear of stigmatising the child and the family.

If healthcare professionals believe a child is at risk of HIV infection, they should make every effort to persuade the parents to agree to a test, leaving legal action as a last resort. 20,22

Parental consent

Under English law, children have gradually increasing rights to make decisions about their health care, as they grow in maturity.22 Similar provisions exist in other parts of the United Kingdom (for example under the Age of Legal Capacity (Scotland) Act 1991).

  • For a young child, the parent makes all decisions (although the child’s point of view should be taken into account and their assent should be sought, after giving them age-appropriate information).23
  • Young people under 16 may consent to medical testing and treatment on their own behalf if a doctor believes they have sufficient understanding and maturity (‘Gillick competence’).
  • From the age of 16, children are deemed mature enough to make their own decisions about medical care.
  • Even for Gillick-competent young people and those aged 16 and over, it is good clinical practice to seek the support and involvement of parents when making decisions about medical care, as long as the young person agrees.23

It is worth noting that although the term ‘Gillick competence’ was first defined in terms of accessing contraception, it is relevant for any kind of medical treatment.

If a clinician believes that a child is at risk of HIV, they would seek parental consent to perform a test. Either the mother or the father can consent (although doctors are advised to seek the agreement of both parents for major decisions).7,22 In cases where consent is refused, the reasons should be explored and the team should continue trying to negotiate a way forward with the parent.20 It may take a number of discussions, over a period of months, for parental consent to be given.

Ultimately, however, healthcare professionals must put the child’s best interests first. If they believe the child needs testing or treatment and they cannot obtain parental consent, the issue must be taken to the court for a decision. The general process is as follows:

  • The Children Act 1989 imposes a duty on local authorities to promote the welfare of children in need. An important principle is that wherever possible children should be brought up and cared for in their own families.
  • Under the Children Act 2004, the NHS may inform the local authority of the situation in order to safeguard the welfare of the child.
  • As a short-term measure, the local authority can apply to the court for an Emergency Protection Order. This would allow the local authority to remove the child from the home for a short period and to consent to testing and treatment.
  • In the longer term, if the parents continue to refuse consent, the local authority can seek a care order. The parents could argue that such a step is disproportionate and the local authority should make every effort to work with them to agree a solution.

If a competent young person refuses testing or treatment, the situation is complex and doctors are advised to seek legal advice. A court order can override a young person’s refusal.20 

For more information

British HIV Association

Authoritative source for clinical standards and guidelines.

Website: www.bhiva.org

Children’s HIV Association of the UK and Ireland (CHIVA)

Source for professional guidelines and contact details for specialist paediatric HIV centres in the NHS. Projects to support young people and families, plus a library of professional resources, are in development.

Website: www.chiva.org.uk

Children’s Legal Centre

Information about legal issues is available on the charity’s website. There are also helplines for free legal advice for children, young people and professionals.

Website: www.childrenslegalcentre.com

Telephone: 08088 020 008 (Child Law Advice Line);  0800 783 2187 (Young People’s Freephone)

General Medical Council

Provides professional guidance to doctors on a range of legal and ethical issues, including consent, confidentiality, and protecting children.

Website: www.gmc-uk.org

References

  1. Kremer H et al. To take or not to take: Decision-making about antiretroviral treatment in people living with HIV/AIDS. AIDS Patient Care and STDs 20(5): 335-349, 2006
  2. Horne R et al. Patients' perceptions of highly active antiretroviral therapy in relation to treatment uptake and adherence: The utility of the necessity-concerns framework. Journal of Acquired Immune Deficiency Syndromes 45(3): 334-341, 2007
  3. Herring JJW Medical law and ethics. 2nd edition, Oxford: Oxford University Press, 2008
  4. Wicks E Human rights and healthcare. Portland, Oregon: Hart Publishing, 2007
  5. General Medical Council Consent: patients and doctors making decisions together. GMC, available at www.gmc-uk.org/guidance/ethical_guidance/consent_guidance_index.asp (date accessed 11 January 2012), 2008
  6. UK Parliament Mental Capacity Act, 2005 s 9-11. Available at www.opsi.gov.uk/acts/acts2005/ukpga_20050009_en_1s (accessed 2 August 2010), 2005
  7. Corfield L, Granne I, Latimer-Sayer W (eds) Consent in adults. In ABC of medical law, Oxford: Blackwell Publishing, 2009
  8. British HIV Association (BHIVA), British Association for Sexual Health and HIV, British Infection Society National guidelines for HIV testing 2008. Available at www.bhiva.org/HIVTesting2008.aspx (date accessed 30 March 2011), 2008
  9. Datta J, Kessel A Unlinked anonymous blood testing for public health purposes: an ethical dilemma? Peckham S, Hann A (eds) Public health ethics and practice. Bristol: The Policy Press, 2010
  10. Health Protection Agency Health protection legislation guidance 2010 HPA, 2010
  11. Chalmers J Legal responses to HIV and AIDS. Oxford and Portland, Oregon: Hart Publishing, 2008
  12. Medical Foundation for AIDS & Sexual Health Protocol for HIV testing of adults outside the HIV specialist setting. www.medfash.org.uk/.../Tackling%20HIV%20testing/Tackling%20HIV%20Testing%20templates%20and%20text%20pdf (accessed 28 April 2010), 2009
  13. National Institute for Health and Clinical Excellence Antenatal care: routine care for the healthy pregnant woman (clinical guideline 62). Available at http://guidance.nice.org.uk/CG62 (accessed 29 April 2010), 2008
  14. Sahai-Srivastava S, Varpetian A Dementia due to HIV disease. In eMedicine (online medical textbook, ed. D Maron). Available at http://emedicine.medscape.com/article/292225-overview (accessed 5 April 2010), 2009
  15. Office of the Public Guardian Mental Capacity Act. Available at www.publicguardian.gov.uk/mca/mca.htm accessed 5 April 2010), 2010
  16. General Medical Council Update to Serious Communicable Disease guidance. Available at www.gmc-uk.org/guidance/update_serious_communicable_diseases.asp (accessed 16 June 2010), 2010
  17. Burrows LA et al. A survey of the management of needlestick injuries from incapacitated patients in intensive care units. Anaesthesia 65: 880-884, 2010
  18. Department of Health HIV post-exposure prophylaxis: Guidance from the UK Chief Medical Officers’ Expert Advisory Group on AIDS. London, 2008
  19. de Ruiter A et al. British HIV Association and Children's HIV Association guidelines for the management of HIV infection in pregnant women 2008. HIV Med 9: 452-502. Available online at www.bhiva.org, 2008
  20. British HIV Association, British Association for Sexual Health and HIV, Children’s HIV Association Don't forget the children: Guidance for the HIV testing of children with HIV-positive parents. Available at www.chiva.org.uk/health/conferences/previous/dontforget, 2009
  21. Elliston S The best interests of the child in healthcare. Abingdon: Routledge-Cavendish, 2007
  22. General Medical Council 0–18 years: guidance for all doctors. www.gmc-uk.org, 2007
  23. Hamadache D et al. HIV testing guidelines for children of confirmed or suspected HIV positive patients. Available at www.chiva.org.uk/health/guidelines/hiv-testing (accessed 29 April 2010), 2009

Acknowledgements

Written by: Colleen Shannon, freelance medical writer

With thanks to: Belinda Dix (Beachcroft LLP), Blake Smith (Terrence Higgins Trust), Bryan Vernon (Institute of Medical Ethics), Michael Keegan (General Medical Council)

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.