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Ethical Issues - Confidentiality

Case study

The following is a worked example of a hypothetical case study showing how ethical principles would apply to a practical problem.

Bob has attended the genito-urinary clinic at his local Trust hospital. Bob is seen by Dr Gomez who informs him that he is HIV positive. Dr Gomez counsels Bob to contact his sexual partners to inform them of his status. Bob starts a course of treatment.

For the last 18 months Bob has been in a relationship with Sue. They are expecting a baby in 2 months time. Before this relationship Bob had a series of sexual partners.

On a subsequent visit to the clinic it becomes clear to Dr Gomez that Bob has not told Sue of his HIV status. Dr Gomez is aware of the impending arrival of their baby and tells Bob that steps should be taken to assess whether Sue is HIV positive and whether the baby is at risk so that if necessary treatment may be started.

Bob adamantly refuses to tell Sue and says that if she is told without his consent then he will stop his course of treatment.

What should Dr Gomez do? Can / should he inform Sue, or Bob’s GP?

Issues to consider

The principle of respect for autonomy requires that personal information should not be disclosed without consent. However, in some cases the autonomy of another person may also be at issue (in this case Sue and previous sexual partners, as well as the baby when born). Not disclosing information may limit their ability to make decisions as to treatment and lifestyle.

Although maintaining confidence in personal information may be the starting point, a balance of the benefits and harms of disclosure / non-disclosure leads to consideration of the consequences of a course of action.

In this scenario the harms of non-disclosure can be identified as:

  • The risk that Sue may be HIV positive. The consequence of not providing information to enable her to be tested is that she is harmed by not knowing her HIV status and not receiving a course of treatment.
  • If Sue is HIV positive and is not aware of the risk the consequences are that she will not take steps to minimise the risk of infection to the baby eg. obtaining treatment during pregnancy, baby born by caesarean section, knowing not to breastfeed, prophylactic treatment.
  • If Sue did later find out that there was a risk to her and that she was not informed she may lose trust in her doctor or the healthcare system.
  • Risks to Bob’s former identifiable sexual partners who could be contacted and informed.

The harms of disclosure would include:

  • If the clinician informs others without Bob’s consent then as a consequence he may lose trust in Dr Gomez, and perhaps the medical profession in general.
  • He has indicated that he will end his course of treatment thus risking relapse and severe health problems including death.
  • There is also a risk that he could go on to infect future sexual partners.
  • Bob may be stigmatized by others who get to know and may have problems with future employment because of discrimination

Applying ethics and law - balancing competing interests and values

It is necessary to balance the potential harms of non -disclosure with the harms that might result from disclosure without consent in breach of the duty of confidentiality.

Paragraph 53 of the GMC guidance Confidentiality(2009) states that disclosure of confidential information without the patient’s consent can be justified to prevent risk of death or serious harm to a third party.

“53. Disclosure of personal information about a patient without consent may be justified in the public interest if failure to disclose may expose others to a risk of death or serious harm. You should still seek the patient’s consent to disclosure if practicable and consider any reasons given for refusal.”

If Sue were to become infected with HIV she would be harmed by contracting a serious disease which if untreated is ultimately life threatening. In addition she could transmit the virus to her child again with potentially life threatening consequences.

In its supplementary guidance on confidentiality (2009) the GMC considers specifically the issue of disclosing information about serious communicable diseases. Section 8 states

“If a patient refuses to allow you to inform someone outside the healthcare team of their infection status, you must respect their wishes unless you consider that failure to disclose the information will put other healthcare workers or other patients at risk of infection. But such situations are likely to be very rare, not least because of the use of universal precautions to protect healthcare workers and patients, particularly during exposure prone procedures”

The particular risk of becoming infected from a sexually transmitted disease (or by vertical transmission from mother to child, cannot be prevented by universal precautions taken by healthcare workers. The GMC advises in these situations, where a person with a sexually transmitted disease refuses to disclose information to their sexual partner, that a doctor may disclose information to the sexual partner “if you have reason to believe they are at risk of infection and that the patient has not informed them or has refused to do so”.  This would appear to be the case in this scenario.

A useful comparison could be made with disclosure of genetic information. Genetic information may have great relevance for the health of relatives. Nevertheless, if the patient refuses to allow relatives to be informed confidence should be maintained unless the health interests’ of family members to be given such information outweighs the duty of confidentiality.

The GMC guidance considers the disclosure of genetic and other shared information (paragraphs 67-69).  Essentially the advice is to encourage patients to share information that would be relevant to a family member, for example of the knowledge could be used to receive prophylaxis or other preventative treatments. However should a patient refuse to disclose the health professional must then make a judgement based on the public interest principle described above.

BMA guidance (Human genetics: choice and responsibility 1998) states that a healthcare professional should consider the following factors in deciding whether to disclose:

  • Severity of the disorder
  • Level of predictability
  • Action relatives could take
  • Harms / benefits in giving or withholding information

What about the interests of the child to be born? In Re C (HIV testing) [1999] 2 FLR 1004 the court considered that it was in the best interests of a baby to undergo testing for HIV (where the mother was HIV positive and had refused interventions to prevent transmission of the virus) despite the fact that the parents refused their consent. Clinicians were of the view that if the child was infected measures could be taken to manage the condition. The court said that the child had interests that were separate from those of its parents (a foetus does not have legal rights but rights do crystallize at birth).

In the case study scenario it would be necessary to consider the likelihood of HIV risk to the baby to determine whether breach of confidentiality is justified. Sue would need to be informed in order to consent to testing / treatment.

Should Bob’s GP be informed? Paragraph 25 of GMC guidance Confidentiality (2009) states that, “Most patients understand and accept that information must be shared within the healthcare team in order to provide their care.”

However, should a patient object to information being shared with another health professional then their wish should be respected unless there is a public interest justification for disclosure.  Thus, if Bob still refuses his wishes must be respected unless failure to disclose would put a health care worker or other patient at serious risk of death or serious harm. As the GMC supplementary guidance points out this is unlikely to be the case if universal precautions are followed.  One situation where there may be an increased risk to a healthcare professional is if a needle stick injury has occurred.  In this situation the GMC guidance advises that it may be appropriate to disclose information if this is needed for decisions about post exposure prophylaxis (Supplementary Guidance paragraph 18)

It would appear, in balancing the harm to Bob with harms to others that the harm to Bob in disclosing without his consent is outweighed by the harmful consequences of not disclosing. However health professionals working in this area may consider that more weight should be given to the loss of trust that might result from breaching confidences.

“Compelling ethical reasons exists for protecting the privacy of persons with HIV infection. An important justification for privacy resides in the principle of respect for autonomy. To respect the privacy of persons with HIV/AIDS is to respect their wishes not be observed or to have intimate information about themselves made available to others. Privacy also enhances the development of trust in the physician. One of the defining characteristics of the doctor/patient relationship involves the sharing - freely given - of private information. Failure to respect the confidentiality of patients drives patients away from HIV testing, counseling, and treatment, and discourages patients from confiding in their physicians. Healthcare facilities that treat persons with HIV argue fiercely that compelling physicians to disclose HIV infection to sexual or needle-sharing partners would mean they would lose the trust of their clients.”
Lawrence O. Gostin, JD, from the September, 1995 issue of the JIAPAC.