Article Text

Download PDFPDF
Commentary
HIV status: the prima facie right not to know the result
  1. Tak Kwong Chan
  1. Correspondence to Dr Tak Kwong Chan, Department of Pharmacology and Pharmacy, The University of Hong Kong, Hong Kong; theo{at}hku.hk

Abstract

When a patient regains consciousness from Cryptococcus meningitis, the clinician may offer an HIV test (in case it has not already been done) (scenario 1) or offer to tell the patient his HIV status (in case the test has already been performed with a positive result while the patient was unconscious) (scenario 2). Youngs and Simmonds proposed that the patient has the prima facie right to refuse an HIV test in scenario 1 but not the prima facie right not to be told the HIV status in scenario 2. I submit that the claims to the right of refusal in both scenarios are similarly strong as they should both be grounded in privacy, self determination or dignity. But a conscientious agent should bear in mind that members of the public also have the right not to be harmed. When the circumstance allows, a proper balance of the potential benefits and harm for all the competing parties should guide the clinical decision as to whose right should finally prevail. Where a full ethical analysis is not possible, the presumption should favour respecting the patient's right of refusal in both scenarios.

  • HIV Infection and AIDS
  • Right to Refuse Treatment

Statistics from Altmetric.com

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

INTRODUCTION

About 80 to 90% of patients with Cryptococcal infection are HIV positive.1 When a patient regains consciousness from Cryptococcus meningitis, the clinician may offer an HIV test (in case it has not already been done) (scenario 1) or offer to tell the patient his HIV status (in case the test has already been performed with a positive result while the patient was unconscious) (scenario 2). For some reason, a patient may refuse to perform the HIV test in scenario 1 and a patient in scenario 2 may refuse to be told the HIV status. I argue that the claims to the right of refusal are similarly strong in both scenarios and that the presumption should favour respecting the patient's right of refusal.

DISTINGUISHING SCENARIOS 1 AND 2

Youngs and Simmonds proposed that a pateint has the prima facie right to refuse an HIV test in scenario 1 but not the prima facie right not to be told the HIV status in scenario 2. The right not to know cannot be grounded in the respect for autonomy, Youngs and Simmonds argued, because withholding information about a patient's HIV status would frustrate his autonomous decision making.2 Instead, there is only a relatively weaker interest not to know grounded in liberty. The fundamental flaws in this argument are that autonomy is defined too narrowly, and that the right not to know does not necessarily have to be grounded in autonomy.

Autonomy is our ability to make choices based on the information that we consider relevant in pursuit of things that we value. According to Beauchamp and Childress, ‘To respect an autonomous agent is, at a minimum, to acknowledge that person's right to hold views, to make choices, and to take actions based on personal values and beliefs’.3 Kant defined the principle of autonomy as “every man's freedom of action,” because every rational being is ‘an end in himself’. Kant further said ‘If a rational agent is truly an end in himself, he must be the author of the laws which he is bound to obey, and it is this which gives him his supreme value’.4 First, the respect for autonomy should entitle the decision maker to decide what information is relevant in the determination of which course to take. Second, a decision made without a particular piece of information (which is widely considered by others to be relevant) cannot be said to be a faulty decision if the decision maker understands well and accepts the consequence of a decision made in this circumstance. Fried wrote, ‘Privacy is the control we have over information about ourselves.’5 This is not to say that the right to privacy is absolute. We have to balance the right to privacy against the interests of the public in appropriate situations. Putting this aside, everyone in general has a strong claim to the right to privacy which should entitle one to refuse any kind of unwanted information. In this sense, the right to privacy may be subsumed in the respect for autonomy.

Alternatively, the respect for autonomy should also confer one the right to make a faulty decision on the basis of incomplete information or even just to be let alone. An autonomous decision does not have to be a good decision in the views of others. Warren and Brandeis wrote in Harvard Law Review:“In very early times…the ‘right to life’ served only to protect the subject from battery in its various forms … Gradually the scope of these legal rights broadened; and now the right to life has come to mean the right to enjoy life—the right to be let alone.”6

I would argue strenuously for this broader scope of autonomy (at a risk of some ill-informed decisions made) rather than Youngs and Simmonds' narrower scope of autonomy (at a risk of the right of self determination wrongfully deprived). The right not to know can also be alternatively grounded as the right to privacy, the right to be let alone, the right of self determination or the right of dignity, all of which are inalienable rights of every human being, as philosopher John Locke wrote.7 It follows that the consequences, coercion and privacy arguments which Youngs and Simmonds proposed to justify the patient's right of refusal in scenario 1 can be proposed similarly to justify the patient's right of refusal in scenario 2.

THE PROPER ETHICAL PRESUMPTION

Despite the fact that a patient in either scenario has the prima facie right of refusal, a proper balance of the potential benefits and harm for all the competing parties is still required to guide the clinical decision as to whose right should prevail, particularly when there is a potential third party at risk of harm. In this section, I will discuss whether the presumption should lie in favour of respecting the patient's right of refusal when a full analysis of the benefits and harm for different parties is not possible. The discussion will focus on scenario 2 and thereafter the rationale of the conclusion can be similarly applied in scenario 1.

What is a proper presumption in an ethical assessment?

A presumption in an ethical analysis allows a conscientious agent to select a favoured option in an urgent situation or when a detailed ethical analysis is impossible for different reasons. For instance, in example 1, the presumption is to save the life of a dying patient when it cannot be ascertained whether the patient wishes to be saved. Put another way, if a clinician decides not to give a life-saving treatment, the burden is on the clinician to prove that there is a valid expression of the wish not to be saved probably in the form of an advanced directive.

  • Example 1: Life-saving treatment (where the patient's wish is not known)

  • Option A1: To let die

  • Possible benefit: wish to die followed

  • Possible harm: life sacrificed

  • Most probable outcome: life sacrificed (presumably most people want to live on)

  • Option B1: To save life

  • Possible benefit: life saved

  • Possible harm: wish to die violated

  • Most probable outcome: wish to die not violated (presumably most people want to live on).

Effort should be made to ascertain whether the patient has previously expressed a wish not to be resuscitated so that an ethical decision of whether to save life does not need to be made based on a presumption. However, when the patient's wish is not yet known, most would agree that the presumption should favour option B1 because the damage of letting die is irreversible, whereas the patient may claim the right to die at the next available opportunity. Based on the assumption that most people want to live on, the potential harm associated with option B1 is also less likely to occur than the potential harm associated with option A1. Therefore, an ethically sound presumption in example 1 should favour option B1 whose harm is of less gravity and less likely to occur than that of option A1.

Two options in scenario 2

A full ethical analysis to assess the possible benefits and harm for the patient and potential third parties may be impossible in scenario 2 if the patient refuses to reveal further information including the sexual history. In this situation, the presumption may favour either one of the following two options:

  • Scenario 2 (where the patient refuses to reveal further information)

  • Option A2: Not to tell HIV status

  • Definite benefit: the right to privacy respected

  • Possible harm: serious harm to third parties

  • Option B2: To tell HIV status

  • Possible benefit: third parties saved from harm.

  • Definite harm: right to privacy infringed

Should we invariably favour the option associated with harm of less gravity?

An ethical analysis becomes more complicated when it involves the competing interests of more than one parties. Some people may suggest that the gravity of harm in option A2 for the potential third parties in scenario 2 apparently outweighs that for the patient in option B2. They may further propose that when there are competing rights between two parties, the option associated with harm of apparently less gravity should always be favoured regardless of the likelihood of the harm occurring. My response is that this viewpoint has to be vigorously refuted. In example 2, X dies and his organ may be harvested to save Y's life. However, X has previously expressed his wish against organ donation. Our options are to follow X's wish or harvest his organ against his wish. Even a consequentialist would unlikely suggest that option B3 which can save a human life should be favoured.

  • Example 2: Organ donation

  • Option A3: respect X's wish

  • Outcome: X's right to dignity/privacy/bodily integrity is preserved

  • Harm: Y will die

  • Option B3: harvest the organ against X's wish

  • Outcome: Y will live on

  • Harm: X's right to dignity/privacy/bodily integrity is breached.

In some countries where an opt-out system is in place for organ donation, the presumption may lie in favour of harvesting the organ if the wish of the patient is unknown. However, in case the patient has opted out from donation, most conscientious agents would not suggest that it is proper to harvest his organs against his wish, even though the harm caused by option A3 is arguably of higher gravity than that caused by option B3. There are two reasons. First, the right of a dead person to dignity and/or bodily integrity and/or privacy is still worth our utmost respect. Second, X is not ethically obliged to give an organ to Y and Y has the right to accept a donated organ but not the right to take X's organ against his wish. It can be seen from this example that the gravity of the harm of different options should not be the only decisive factor in an ethical analysis. So, even on the premise that the gravity of harm associated with option A2 is higher than that of option B2 in scenario 2 (which one may deny), in the determination of a proper ethical presumption, it will be relevant to consider also the rights and ethical obligations of different parties and the likelihood of the two options to cause harm.

The ethical obligations to protect a third party from harm in scenario 2

In scenario 2, a potential benefit of option B2 is that the potential third parties who are also HIV positive may receive HIV treatment. Assuming that a third party can be located, the next relevant issue is whether the patient has an ethical obligation to notify this third party so that they can be tested and receive treatment if needed. The possibilities are two fold. First, the patient contracted the virus from this third party. In this case, the patient has no ethical obligation to prevent harm for this third party. Second, the patient transmitted the virus to this third party. It is vital to bear in mind that it is the virus that causes the harm where the patient is only a reservoir for transmission of the virus. It cannot be said that the patient is ethically culpable for the harm as the patient did not transmit the virus to the third party with intention (rightly so assumed because the patient does not know the result of the HIV test yet). Given the harm already done (for which the patient has no ethical culpability), it is difficult to argue that the patient has an ethical obligation to save this third party from further harm. There may be conscientious obligation (for instance for the spouse) but very likely there is none because if a conscientious obligation is present then the patient would not likely have refused to be told the HIV status.

Another potential benefit of option B2 is that further transmission of the virus may be prevented. Most people would agree that the patient has an ethical obligation not to transmit the virus and the potential third parties have the right not to be harmed. However, an ethical obligation not to harm arguably does not arise so far as the patient is not yet aware of his HIV status. In fact, further transmission can be effectively prevented only if the patient modifies the sexual behaviour, notifies the sexual partner(s) and/or takes antiviral treatment. However, as the motivation to notify the partner(s) was shown to be influenced by the patient's sense of ethical responsibility, concern for the partners' health, the severity of the disease and cultural factors,8 a patient in scenario 2 is probably less motivated to do so. Nor would a patient disinterested to know the HIV status be motivated to take antiviral treatment. Furthermore, a recent study by Kalichman et al showed that the association between HIV treatment and prevention of further transmission hinges on sustained treatment adherence and enhanced behavioural intervention.9 Unless there is a system of mandatory partner notification and HIV treatment (with monitoring) which there is not in most countries at the moment, I submit that the aim of preventing further transmission is too remote to justify a presumption to infringe the patient's right of refusal (even if we grant that the ethical obligation not to further transmit the virus exists).

The likelihood that a third party can benefit from option B2

In case one argues otherwise that a patient in scenario 2 has an ethical obligation to protect the potential third parties from harm, the following empirical data suggest that the likelihood that option B2 can benefit those third parties would not be high enough to justify a presumption in its favour. In a systematic review of studies about the effectiveness of partner referral service, a mean of 67% of identified partners were informed of their potential exposure to HIV, and a mean of 63% of those informed came forward for a test. Of those tested, a mean of 20% were HIV positive. In short, there is only 1% to 8% chance to identify an HIV-positive partner from each index case through partner notification.10 As a patient in scenario 2 is likely less motivated to participate in partner notification or referral, the chance that option B2 can save an HIV-positive third party from harm should even be less than 1% to 8% as cited in the literature. In other words, option A2 has a fairly low chance to cause harm.

Some people may then suggest that we should focus our discussion more on the welfare of the entire population from the perspectives of public health. There is no doubt that further transmission of HIV may be maximally prevented through coercion, e.g. by passing a law that forces certain groups of people to undergo an HIV test, be informed of their HIV status and receive treatment against their wish. But I argue that a presumption in favour of option B2 will not be a fair public health intervention. A clinical trial conducted in Mexico showed that the behavioural intervention to promote condom use did not result in significant reduction in the cumulative incidence of HIV.11 In a randomised controlled clinical trial to study the effect of treatment on HIV transmission, in which 1763 infected subjects with CD4 counts between 350 and 550 cells per cubic millimeter were recruited,12 it was shown that HIV treatment has to be given to 60 patients to prevent one case of further HIV transmission in serodiscordant couples.13 This is not at all a claim to discount the effect of providing behavioural intervention or antiviral treatment as a part of the public health strategy to reduce the spread of HIV infection. In contrast, clinicians should encourage all those who may benefit from a treatment to receive it as it is good for the patient and is potentially good for a third party. However, it is a different matter when we consider a public health intervention which encourages infringing the right of refusal of a huge number of patients just to benefit very few other third parties. Most conscientious agents would require that a public health measure should adopt the utilitarian approach to benefit the majority (of those affected) and harm as few as possible. While these empirical data may not fully fit the context of scenario 2, they preliminarily suggest that the magnitude of incremental benefits would probably be too small to substantiate a public health intervention to have a presumption in favour of option B2 in scenario 2.

Presumption should favour option A2

To make a presumption in scenario 2 in favour of option B2, the substantiating evidence has to reach a very high threshold because option B2 invariably infringes a patient's prima facie right not to know. Considering that the patient has no clear ethical obligations for the third parties potentially at risk of harm, that infringing the patient's right is too remote from preventing further transmission, and most importantly, that option B2 is not likely to benefit any third party, I argue that the threshold is not reached. Because option B2 will result in definite harm to the patient likely without any benefit for the potential third parties, option A2 should be favoured in the presumption.

  • Scenario 2 (where the patient refuses to reveal further information)

  • Option A2: Not to tell HIV status

  • Definite benefit: the right to privacy respected

  • Possible harm: serious harm to third parties

  • Most probable outcome: right to privacy respected, no third party harmed

  • Option B2: To tell HIV status

  • Possible benefit: third parties saved from harm.

  • Definite harm: right to privacy infringed

  • Most probable outcome: right to privacy infringed, no third party saved from harm.

For similar reasons, the presumption should favour preserving a patient's right to refuse an HIV test in scenario 1. However, it cannot be over-emphasised that although the favoured option may prevail (particularly when the patient refuses to disclose sufficient information), where possible, a detailed ethical analysis should be engaged to assess how likely a third party may benefit from infringement of the patient's refusal. The disease severity, patient's attitudes towards treatment, number of sexual partners, sexual behaviour, identifiability of partners, patient's willingness to notify partners are all relevant factors. At the conclusion of the ethical assessment, a conscientious agent should be free to select either option without regard to the presumption.

CONCLUSIONS

Clinicians should balance a patient's right of refusal against the need to mandate an HIV test or disclose one's HIV status. Preventing harm to the potential third parties is a relevant consideration, but this should not be made more important than considering the potential harm that may be caused to a patient through the loss of dignity, self-worthiness and the right to be let alone. In the clinical setting, proper history taking and effective communication is of utmost importance which will allow a clinician to fully assess the risks of harm to the potential third parties. In both scenarios, I submit that the presumption should favour respecting the patient's right of refusal. However, the likelihood of preventing harm to the potential third parties by infringing the patient's right should deserve careful deliberation. The disease severity, patient's attitudes towards treatment, the number of sexual partners, patient's sexual behaviour, identifiability of partners, patient's willingness to notify partners, the legal and policy framework of partner notification are all relevant to the estimation of the benefits and harm for the potential third parties which may de facto shift the balance away from the presumed option.

References

Footnotes

  • Competing interests None declared.

  • Provenance and peer review Commissioned; internally peer reviewed.

Linked Articles

Other content recommended for you