The Protection of Individuals’ HIV Status under the Right to Private Life

Under Article 8(1) of the European Convention on Human Rights (ECHR), all individuals have the right to respect for their private life. The European Court of Human Rights’ (ECtHR) case law makes clear that the processing of an individual’s HIV status as data falls within Article 8(1). Generally, the Court has established that the collection, storage and disclosure of ‘highly sensitive personal data’ falls under Article 8(1) (Surikov v Ukraine, [75]). In both PT v Moldova and OG v Greece, the Court assessed alleged violations of Article 8(1) where individuals’ HIV status had been disclosed.

The disclosure of an individual’s HIV status is only compatible with the right to private life where the interference pursues a legitimate aim, was done in accordance with domestic law, and is necessary in a democratic society, in accordance with Article 8(2). The Court considers data protection to be of ‘fundamental importance for the effective exercise’ of the right to private life, therefore States’ margin of appreciation for determining whether the disclosure pursues a legitimate aim is limited (PT v Moldova, [27]). The PT judgment suggests that, in the HIV context, it is only where an individual’s HIV status poses health risks that a disclosure of that status could serve a legitimate aim (PT v Moldova, [29]). Even when a measure serves such a legitimate aim, the Court will closely scrutinise the necessity of the disclosure. In OG, the Greek authorities published the names, photographs, and HIV-positive status of several sex workers. Although the Court accepted that the measure served the legitimate aim of the protection of the rights and freedoms of others – insofar as the disclosure would encourage sex workers’ clients to undergo HIV testing – the Court affirmed that the disclosure of such information without an individual’s consent can only be reconciled with Article 8(1) where it defends an overriding public interest (OG v Greece, [149], [153]). The Court was not satisfied that the disclosure could achieve the legitimate aim identified, noting that no other measures had been considered which could expose the sex workers’ data to a lesser extent (OG v Greece, [155]-[156]).

ECHR Implications of the Grindr Litigation

Grindr is not a public body: its actions are not attributable to a State under the ECHR, nor does the UK’s Human Rights Act 1998 require the company to protect ECHR rights. However, it is crystal clear that if a public body disclosed individuals’ HIV status without consent for commercial purposes, this would violate Article 8 ECHR.

There have been creative attempts by some national courts to enable litigation against companies for violations of international law, most notably the Canadian Supreme Court’s decision in Nevsun v Araya. However, without reinventing the wheel, the ECHR may indirectly allow for Grindr to be held to account for violating Article 8. The ECHR does not simply require States to desist from violating ECHR rights – States are also under positive obligations to protect those rights (see Council of Europe Human Rights Handbook No. 7, pp 5-6). Although positive obligations are clearest in other ECHR rights, particularly Article 2’s right to life (see, e.g., Osman v UK, [115]; McCann v UK, [202]-[214]), such obligations have also been recognized in cases of third party interference with the right to private life. In Beizaras and Levickas v Lithuania, the Court accepted that Article 8 may require the adoption of measures ‘in the sphere of relations between individuals’ to protect the right to private life. In that case, Lithuania’s failure to take effective measures to investigate homophobic hate speech against a gay couple violated Article 8(1) in combination with Article 14’s prohibition on the discriminatory enjoyment of ECHR rights ([110], [129]-[130]).

In a similar vein, if the UK courts’ application and interpretation of the UK GDPR fails to sanction Grindr for the disclosure of users’ HIV status, the UK may find itself before the ECtHR for having failed to protect those users’ rights to their private lives under Article 8(1). Hopefully, if the applicants’ case is proven, in accordance with their duties under the Human Rights Act 1998 to take account of ECtHR decisions, and interpret legislation in accordance with ECHR rights, the British courts will award an appropriate remedy against Grindr and underscore that the misuse of personal health data for commercial purposes is unacceptable.

This litigation follows two high-profile reprimands against Grindr by European data protection agencies concerning the company’s sharing of user information. In December 2021, the Norwegian Data Protection Authority (Datatilsynet) fined Grindr NOK 65 million (roughly €5.7 million) for sharing user data without voluntary, specific, or informed consent under the EU’s General Data Protection Regulation 2016 (GDPR). The decision was upheld by Norway’s Privacy Appeals Board and is now being challenged by Grindr before the Norwegian courts. Subsequently, in July 2022, the UK’s Information Commissioner’s Office formally reprimanded the company after determining that it had failed to provide “effective and transparent privacy information” to its UK users in relation to the processing of their personal data.

UK’s Data Protection Regime

The cornerstone of the UK’s data protection regime is the EU’s GDPR, retained in domestic law following Brexit as the ‘UK GDPR’. The UK GDPR outlines binding principles for data processing, chief among which are the principles that data be processed ‘lawfully, fairly and in a transparent manner’ (Article 5(1)(a)) and that data is collected for ‘specified, explicit, and legitimate purposes’ and is not further processed in a manner incompatible with those purposes (Article 5(1)(b)). The general principles of Article 5 are expanded upon in later UK GDPR provisions. Most relevant for present purposes is Article 9 which regulates the processing of ‘special categories of personal data’.

HIV Status as Protected Data

Under Article 9(1), it is generally prohibited to process ‘special categories’ of personal data, including ‘data concerning health or data concerning a natural person’s sex life’. It is self-evident that an individual’s HIV status falls within this definition: it clearly concerns an individual’s health and it is also data concerning an individual’s sex life insofar as it relates to an infection capable of sexual transmission. Although Article 9(1) also covers data concerning sexual orientation, to interpret HIV status as concerning sexual orientation would be illogical as persons of all sexual orientations can be HIV-positive. In the UK, for example, the UK Health Security Agency’s 2022 ‘Positive Voices’ survey of HIV-positive Britons reported that 19% of the men and 95% of the women participating in the study identified as heterosexual. The claim against Grindr also alleges that information about users’ sexual orientation has been illegally shared, but this does not mean that data concerning an individual’s HIV status is, in principle, indicative of a person’s sexuality.

Accordingly, an individual’s HIV status can only be processed subject to one of a limited number of exceptions outlined in Article 9(2), the broadest being the exception under Article 9(2)(a) where the individual has given explicit consent to the processing of that personal data for one or more specific purposes. The Grindr claim alleges that explicit consent was not given by users. In other words, individuals’ HIV status – shared out of concern for the health of potential sexual partners – was allegedly exploited by Grindr for revenue, that data being passed to advertising companies and, potentially, fourth parties without users’ consent. Grindr could, foreseeably, argue that its disclosure is covered by the exception in Article 9(2)(e) – which allows for data to be processed which has been ‘manifestly made public’ by an individual – on the basis that a Grindr user’s HIV status is visible on their profile. The counterargument would ask whether sharing one’s HIV status on a profile only visible to other users of an app is data ‘manifestly made public’, particularly if the user does not explicitly identify themselves on that profile.

Taking advantage of an individual’s disclosure of their HIV status by sharing it for profit is an indignity. In the context of international human rights law, it may also engage State obligations to protect an individual’s private life. This question is examined in Part II of this blog.

Assisted dying and voluntary euthanasia in the Northern Territory

In 1995, Australia’s Northern Territory – a sparsely populated jurisdiction, a quarter of whose population identify as Aboriginal and Torres Strait Islanders – legalised assisted dying and voluntary euthanasia for terminally ill adults who were suffering unacceptable pain, suffering or distress, where a medical practitioner was satisfied on reasonable grounds that the patient was terminally ill, subject to verification by another medical practitioner and a psychiatrist.

Although self-governing since 1978, the Northern Territory is not a State like New South Wales or Queensland: along with the Australian Capital Territory, it is a Territory of the Commonwealth of Australia and, under Section 122 of the Australian Constitution, the Federal Parliament can repeal any Territorial law. Under the 1997 Euthanasia Laws Act, the Federal Parliament amended the Territories’ self-government legislation to exclude the Territories’ ability to enact any legislation on assisted dying and voluntary euthanasia. The ban was in spite of an alleged promise by Prime Minister Fraser, who oversaw the granting of self-government to the Northern Territory, that the Federal Government would never override the Territory’s laws. Before its repeal, four people ended their lives with medical assistance under the Northern Territory’s assisted dying regime.

The mood in Australia eventually shifted. Starting with Victoria in November 2017 and ending with New South Wales in May 2022, every State passed legislation permitting assisted dying in some form . However, it was not until December 2022 when the Federal Government repealed the 1997 ban on the Territories’ ability to enact their own such laws. As of yet, the Northern Territory has not reintroduced an assisting dying law, although the Australian Capital Territory’s government recently introduced such a bill.

Comparing the Northern Territory with the Isle of Man

There are clear similarities between the situation of the Northern Territory and the Isle of Man regarding assisted dying laws. Both are jurisdictions with self-government but limited legislative power whose legislative sovereign adopted/adopts a strict prohibition on assisted dying. In Australia, when the Northern Territory passed its assisted dying law, every State and Territory criminalised (and continue to criminalise outside of their assisted dying regimes) assisting a suicide. In England and Wales, assisted suicide is specifically criminalised and voluntary euthanasia is treated in law as homicide, notwithstanding the existence of governmental guidance regarding when such incidents should be prosecuted.

There is a logic behind why a country may be hesitant to allow the government of a territory under their jurisdiction to allow for assisted dying, namely, to prevent ‘suicide tourism’ in which country A’s residents travel to territory B to lawfully end their lives, therefore undermining country A’s government’s own prohibition. The Manx regime, unlike the Northern Territory’s regime, includes a residency requirement, but, as a part of the Common Travel Area, British and Irish citizens can freely reside in the Isle of Man – perhaps this will give rise to ‘suicide emigration’? Notwithstanding this concern, a country may simply be unwilling to allow for a territory under its jurisdiction to enact a morally and politically contentious policy that the country itself has rejected. For example, in 2015, the UK Parliament overwhelmingly rejected the Assisted Dying Bill (No. 2), which was much more restrictive than the Manx proposal: the bill would only have legalised assisted dying (not voluntary euthanasia) and would have required the approval of the High Court for assistance to be provided, alongside the requirement that the individual seeking assistance was an adult with legal capacity, suffering with a terminal illness with a life expectancy of less than six months, who had expressed a clear and settled intention to die.

Like the Northern Territory, the Isle of Man’s legislation can be blocked without its agreement: legislation passed by the Manx Parliament requires Royal Assent to become law, and the UK’s Justice Secretary can recommend that the King’s representative on the Isle of Man, the Lieutenant Governor, withhold Assent. In 2010, the UK House of Commons’ Justice Committee found that, although the power to withhold Assent could clearly be used in certain circumstances (e.g., where the Crown Dependencies’ legislation would conflict with the UK’s international legal obligations), the exact grounds for the power’s exercise are “not entirely clear” (see paras 50-51 of the 2010 Report). It is not unforeseeable, considering the UK Government’s current battle with the Scottish Government over proposed reforms to gender identification, that the Isle of Man may, like the Northern Territory, find its assisted dying law short-lived, if alive at all.

Want to learn more?

• The Assisted Dying for Terminally Ill Adults (Scotland) Bill: Voluntary Euthanasia, Self-Administration and Disability Discrimination
• RightsUp Pops: Trevor Moore on Assisted Dying
• The Right to Die with Dignity: The Indian Supreme Court Allows Passive Euthanasia and Living Wills
• UK and the Assisted Dying Bill: Autonomy in Death Continues to Wait Its Turn

Current Legality of Assisted Dying in the Isle of Man

Along with the Bailiwicks of Jersey and Guernsey, the Isle of Man enjoys semi-independence as a British Crown Dependency: it is a self-governing country and not a part of the UK, although the UK holds certain responsibilities towards the island, such as ensuring its defence, because the nations share a Head of State. Due to this close relationship, the Isle of Man often follows legal developments in the UK, although it is not constitutionally obliged to do so.

In Manx law, assisted dying is unlawful: under section 2(1) of the Criminal Law Act 1981, it is an offence, punishable by up to fourteen years’ imprisonment, to aid, abet, counsel or procure the suicide or attempted suicide of another. A similar offence exists in England and Wales for encouraging and assisting suicide or attempted suicide under section 2(1) of the Suicide Act 1961.

The Isle of Man is bound by the obligations of the European Convention on Human Rights (ECHR), internationally via the UK’s own membership of the Convention (see Tyrer v. UK, §13) and domestically under its Human Rights Act 2001. Article 2 ECHR’s right to life does not include a right to die (see Pretty v. UK, §§37-40), but it does not prohibit assisted dying or euthanasia regimes (see Mortier v. Belgium, §§118-127). Although an individual’s choice to decide how and when their life will end is protected by the right to private life under Article 8 ECHR, States are granted considerable discretion to regulate how and when an individual may decide that their life should end due to their positive obligation to protect life under Article 2 (see Haas v. Switzerland, §§50-61).

Proposed Assisted Dying Regime in the Isle of Man

Having recently rejected motions to debate assisted dying legislation proposed by parliamentarians in 2015 and 2020, on 24 May 2022 Tynwald’s lower house, the House of Keys, voted 22-2 to grant leave for an assisted dying bill to be introduced. The Assisted Dying Bill 2023, proposed by Dr. Alex Allinson, largely replicates the Assisted Dying Bill introduced by Lord Falconer into the UK’s House of Lords in 2014: it allows adults with a terminal illness, who are reasonably expected to die within six months, to be prescribed life-ending medication. The scheme requires that the patient has been an ordinary resident of the Isle of Man for at least one year, and that they have expressed a clear and settled intention to end their life in a formal declaration. The condition and intention of the patient is to be verified by two doctors. Additional safeguard measures include the right for any person to conscientiously object to their participation in the acts authorised by the regime, and a prohibition on medical professionals suggesting assisted dying to, or initiating discussions on assisted dying with, their patients.

There is an important difference between the proposed Manx regime and legislative proposals which have failed in the UK: the Assisted Dying Bill 2023 would also legalise voluntary euthanasia. Whereas assisted dying generally refers to the provision of services, usually medication, which allow an individual to end their life themselves, voluntary euthanasia refers to Person A ending the life of Person B with Person B’s consent. Under Dr. Allinson’s proposal, the terminally ill individual may request an assisting medical professional to administer their life-ending drugs intravenously.

Public Opinion

Few ethical debates are as polarised as the legalisation of assisted dying. According to the Manx Government’s own consultations, 49.6% of respondents disagreed with the proposed regime, with 49.0% in support. Broadly, the respondents in favour of the Bill cited the importance of individual choice, the preservation of human dignity, and autonomy; those opposed expressed concern about the potential devaluation of human life and the pressuring of vulnerable individuals into early deaths.

Part II of this blog looks at the legalisation of assisted dying and voluntary euthanasia in Australia’s Northern Territory, and the challenges the Isle of Man may face if it does enact its own regime.

Want to learn more?

• The Assisted Dying for Terminally Ill Adults (Scotland) Bill: Voluntary Euthanasia, Self-Administration and Disability Discrimination
• RightsUp Pops: Trevor Moore on Assisted Dying
• The Right to Die with Dignity: The Indian Supreme Court Allows Passive Euthanasia and Living Wills
• UK and the Assisted Dying Bill: Autonomy in Death Continues to Wait Its Turn