Privacy Concerns Under the HIV Bill 2014

The Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (Prevention and Control) Bill, 2014 (the HIV Bill) is likely to be tabled in the Rajya Sabha in the current winter session. The HIV Bill is aimed at preventing and controlling the spread of Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) and protecting the human rights of those affected by HIV and AIDS.

Important human rights considerations under the HIV Bill include prohibiting discrimination against HIV+ persons and also addressing the causes from which such discrimination stems. Lack of safeguards for sensitive medical information such as a person’s HIV status and the subsequent use of this information for other purposes enhance the scope for discrimination. In an attempt to address this, the Bill imposes several obligations on central and state governments, healthcare providers and establishments (such as organisations, cooperative societies etc.). This post examines the provisions relating to three critical aspects of the HIV Bill – informed consent, disclosure of information and clauses related to confidentiality.

INFORMED CONSENT

Clause 2(n) defines “informed consent” under the HIV Bill. There are two elements to this definition. The first element stipulates that consent must be without any coercion, undue influence, fraud, mistake or misrepresentation. The second element requires that consent must be obtained after being informed of the risks, benefits and alternatives to the proposed intervention and in a language or manner that can be understood by the individual giving consent.

Clause 5 of the HIV Bill mandates that informed consent must be sought before subjecting any person to an HIV test, or if an HIV+ person or persons residing with her are subjected to any medical treatment, intervention or research. If the person in question is incapable of giving consent, it is to be sought from her representative.

Further, this clause stipulates that informed consent includes counselling both before and after such a test is conducted.

Clause 6 of the HIV Bill lays down four exceptions where medical interventions can be carried out without obtaining such consent. The first exception pertains to a court order that may require a person to undergo an HIV test if the court feels that this information is necessary to determine the issues before it.

The second exception allows the procuring, processing, distribution or use of a human body or parts (such as tissues, blood, semen or other bodily fluids) for medical research or therapy. This exception is extremely broad in its scope. The Bill does not define either ‘medical research’ or ‘therapy’. It is difficult to ascertain the exact purpose for this exemption based on the text of the Bill alone. Furthermore, it is unclear why an exception should be made for medical research at all. For example, South Africa’s ‘National HIV Counselling and Testing Policy Guidelines’ require informed consent to be in writing in the context of research and clinical trials. This exception also states that if the person undergoing the test requests its result prior to donation, she would only be entitled to it after having undergone post-test counseling.

The third exception deals with HIV tests for epidemiological or surveillance purposes where the test is anonymous and not for the purpose of determining a person’s HIV status. However, the subjects of these tests are required to be informed of the purposes of such a study. Again, despite the fact that the test is anonymous, it is unclear why the obligation to seek informed consent has been done away with. Participation in any study must be voluntary and based on an informed decision.

The final exception allows an HIV test to be conducted for screening purposes in licensed blood banks.

DISCLOSURE OF HIV STATUS

Clause 8 provides that no person can be compelled to disclose their own HIV status unless required to do so ‘by an order’ which states that the disclosure is necessary in the interest of justice or for the determination of issues before it. This clause fails to mention that the order must be by a competent court. The Parliamentary Standing Committee Report on this Bill had recommended this addition citing ambiguity in the existing provision. However, the HIV Bill has not been amended to reflect this recommendation.

The HIV Bill states that any person who has information about another’s HIV status or any other private information, which was either imparted in confidence or in a fiduciary relationship, cannot disclose or be compelled to disclose such information except with the informed consent of that person. This clause requires the consent to be recorded in writing.

However, the Bill envisages six situations where such disclosure may be made without seeking informed consent.

The first exception deals with disclosure made to another healthcare provider who is involved in the treatment or counseling of that person, provided that the disclosure is necessary for the treatment.

The second exception allows disclosure pursuant to an order of a court when the information is necessary in the interest of justice or for determination of any issue before it. Seeing that this exception permits disclosure specifically pursuant to a court order, there is no reasonable explanation for the vague drafting of the first part of Clause 8.

The third exception permits disclosure in suits or legal proceedings when such information is necessary for filing the proceedings or instructing one’s lawyers.

The fourth exception allows a physician or a counsellor to disclose the HIV+ status of a person to his or her partner if they reasonably believe that the partner is at significant risk of HIV transmission. However, Clause 9 stipulates safeguards for this. Such disclosure is only permissible if the HIV+ person has been counseled to inform their partner and the physician or counsellor is satisfied that this is not likely to happen. They are under an additional obligation to inform the HIV+ person of their intention to disclose this information to their partner. This information can only be disclosed in person and after the partner has been counselled.

Clause 9 further provides that if the HIV+ person is a woman who is at the risk of being abandoned or abused (physically or mentally) as a result of such disclosure, the counsellor or physician has an obligation to not inform her partner. This clause also absolves the physician or counsellor from any civil or criminal liability arising out of disclosure or non-disclosure under this clause.

The fifth exception allows disclosure if it relates to statistical or other information if it is reasonably clear that it cannot lead to that person’s identification. The last exception permits disclosure to officers of the central and state governments or the State AIDS Control Society for the purposes of monitoring, evaluation or supervision. This exception is also couched in extremely broad and vague terms. Ideally, the law must explicitly mention the specific Authority or officers who may have access to this information.

OBLIGATIONS OF ESTABLISHMENTS

Clause 11 of the HIV Bill requires every establishment (body corporate, co-operative society, organisations etc.) to adopt data protection measures to store HIV related information of persons. These measures will be framed by way of guidelines by the government, including mechanisms for accountability and liability.

SPECIAL PROCEDURE IN COURT

The HIV Bill also incorporates procedures to ensure confidentiality during judicial processes. It allows the court to pass an order to – a) suppress the identity of a person by using a pseudonym; b) hold the proceedings in camera; or c) restrain any publication that would disclose the identity of such person, if an application is made to this effect.

PENALTIES

It is pertinent to note that the HIV Bill makes no mention of any penalty for a breach of obligations under Clause 5 (pertaining to informed consent) and Clause 8 (pertaining to disclosure of information).

It also mandates every state government to create an Ombudsperson to hear complaints but almost all aspects pertaining to the Ombudsman’s qualifications, functions, jurisdiction have been left to delegated legislation by the relevant state. Further, Clause 24 stipulates that the Ombudsperson can inquire into violations ‘in relation to healthcare services by any person…’. While this might include violations related to informed consent, it remains unclear if the scope of the Ombudsman’s powers will include complaints related to unlawful disclosure of information.

The Bill must be welcomed for introducing procedural safeguards in medical interventions related to HIV+ persons. However, a lot of the provisions, including exceptions, suffer from over breadth and vagueness. Furthermore, the absence of any penalty for breach of provisions relating to informed consent and disclosure of information almost render these safeguards futile.

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2 thoughts on “Privacy Concerns Under the HIV Bill 2014

  1. Pingback: Digitisation of Health / Medical Records: Is the law keeping up? – The CCG Blog

  2. Pingback: Digitisation of Health / Medical Records: Is the law keeping up? — KI Design Magazine

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