Confidentiality, partner notification and HIV infection

[Guest guest]

Confidentiality, partner notification and HIV infection

S Abraham, J Prasad, A ph and KS

[issues in Medical Ethics. [Jan-March 2002-10(1).

http://www.medicalethicsindia.org/]

The ethical issues relating to confidentiality and partner

notification, within the context of Human Immunodeficiency Virus (HIV)

infection, are complex. The individual's right to confidentiality can

be in conflict with the partner's right to be protected from medical

risk. This paper describes some situations faced by the staff of the

Department of Community Health, Christian Medical College, Vellore. It

discusses ethical issues related to confidentiality and partner

notification, and documents problems relevant to India and to

comprehensive community health programmes with close links to the

community.

The CHAD programme

The primary health care programmes of CMC, Vellore, serve three

administrative blocks in Vellore district, Tamil Nadu and the

population of Vellore town. The Community Health and Development

(CHAD) Programme serves one of these blocks, Kaniyambadi, reaching a

population of 106,010, a significant proportion of which is from the

lower socio-economic strata. The programme, run by the department of

community health (which has worked in Kaniyambadi Block for over 40

years) is responsible for health care in the area in conjunction with

governmental agencies. The front line of CHAD's health care structure

is the part-time community health worker supported by a community

health team which visits every village fortnightly. Cases requiring

greater medical input are referred to the base hospital. CHAD has

close links with the community, and it must be responsive to the

community's needs. The issues faced by the programme in relation to

HIV infection have to be seen in this context.

Clinical situations

Ms. A, a 30-year-old housewife, was admitted to the hospital with a

diagnosis of AIDS. Her husband, Mr. B, was also tested and found to be

positive for HIV. She died within a few weeks. Six months later, Mr. B

married his wife's sister, Ms. C, also from the area. Although the

community health staff knew the diagnosis they did not interfere, as

it would compromise Mr. B's confidentiality. Two years later, Ms. C

came to the CHAD hospital with a letter from another hospital stating

that her husband, Mr. B, was diagnosed to be in the terminal stage of

AIDS. She also tested positive for HIV.

Ms. K was referred to the high-risk antenatal clinic as her first

child had mental retardation with features suggestive of congenital

syphilis. Ms. K and her husband, Mr. L, tested positive for syphilis

and HIV infection. They were treated for syphilis and counselled

regarding the HIV infection. Ms. K delivered an apparently normal

child. However, the child developed severe septicaemia and died two

weeks after birth. Ms. K was asked by her husband to leave his home.

Later she mentioned that her husband was planning to marry a second

time and provided the bride's address. She wanted the hospital staff

to help her prevent the marriage, as she knew the implications of the

disease.

Ms. P had a tubectomy at the hospital after a normal home delivery.

The neonate developed a swelling of the knee joint and tested positive

for syphilis. Ms. P and her husband (Mr. Q) were tested for HIV

infection and were found to be positive. Mr. Q admitted that he had

another sexual partner, Ms. R, a married woman. Ms. R also tested

positive for HIV. Her husband, Mr. S, was not aware of his wife's

extra-marital relationship. However, Ms. R refused to mention her HIV

status to her husband, continued to have sexual relationships with

both partners and refused to use condoms. All four were from the area

and known to the community health staff. The hospital staff found it

difficult to take up the issue with Mr. S, as it would violate the

confidentiality agreement with Ms R.

Mr. X, a 22-year-old male, was admitted to the hospital with

septicaemia, tested and found positive for HIV. He was engaged to be

married.. He and his parents were counselled about the nature of the

illness and advised to postpone his marriage. Despite detailed

discussion the family was not keen to change their plans. The public

health staff knew the girl and advised her parents to inquire about

the nature of Mr. X's illness before proceeding with her marriage. The

family approached Mr. X, asked about his illness and went on to break

the engagement.

Public health staff have a responsibility not only to those with HIV

but also to all residents of the area they serve. In this context, the

patient's right to confidentiality (when they refuse to discuss the

HIV status with their partners) is in conflict with rights of their

partners to protection from medical risk.

Confidentiality

Confidentiality as it relates to HIV continues to be a primary concern

of individuals with the disease, as well as to programmes and

institutions that provide them with services (1,2). Many programmes

have a confidentiality policy specifically relating to HIV, because of

the potential consequences of unwarranted disclosure. HIV infection

has generated significant misinformation, fear and prejudice, the

foundations of discrimination. Efforts to maintain confidentiality to

prevent discrimination have formed the cornerstone of public health

strategy to control the spread of the disease.

Respecting a person's right to privacy - the right to decide who

receives personal information and how it may be used - requires that

those with access to such information maintain its confidentiality.

Confidentiality, rooted in the right to privacy, is a matter of

personal autonomy. Since most public health strategies for dealing

with HIV are based on individuals coming forward voluntarily for

testing, counselling and treatment, failure to maintain

confidentiality could threaten the continued cooperation of people

with HIV. Many public health authorities have argued that the

protection of the public's health was not compromised by the

protection of confidentiality. On the contrary, the protection of

confidentiality was a precondition for achieving public health goals.

Partner notification

The seriousness of the threat to the health of unsuspecting third

parties resulted in the debate on informing people at risk (3,4),

called 'partner notification'. Two approaches to informing third

parties have been debated: contact tracing and the duty to warn.

Contact tracing

The contact tracing approach emerged from sexually transmitted disease

programmes (3). Based on the patient's voluntary cooperation in

providing the names of contacts, this never involved the disclosure of

the identity of the index patient (although these could be deduced in

some cases) and entailed protecting the absolute confidentiality of

the entire notification process. The patient maintained ultimate

control over the process, and could provide or withhold names of

contacts. The fear of discrimination led to opposition to this

approach for HIV. The fact that no therapy was being offered (at the

onset of the epidemic) for HIV infection made it radically different

from the role of contact tracing in other STDs. The proponents of

contact tracing argued that attempting to change high-risk behavior

was reason enough to pursue contact tracing. Its opponents claimed

that it was an intrusion of privacy without any compensatory benefits.

The record of programmes using contact tracing is variable. However,

the current emphasis is still on notification by the patient rather

than the provider. With the advent of treatment for HIV, the debate in

the West on contact tracing has shifted from privacy to efficacy of

available treatment.

Duty to warn

The second approach involved the moral 'duty to warn' (3). This

approach came out of the clinical setting where the physician knew the

identity of the person deemed to be at risk. It argued for disclosure

to endangered persons without consent of the patient. It could also

involve the revelation of the patient's identity.

The Tarasoff ruling in the US in 1974 (6) formed the basis of partner

notification. The ruling challenged the professional discretion of

physicians faced with patients who might endanger third parties. The

court held that the physician/therapist could be held liable for

failing to take adequate steps to protect a known intended victim of

his/her patient, who in this case had threatened to murder his former

girlfriend. With Tarasoff, a matter of professional discretion became

a legal obligation. The basis of the decision was the ethical judgment

that although confidentiality was crucial for individual patient

autonomy, the protection of third parties vulnerable to potential

serious harm must be given priority.

The Tarasoff doctrine formed the context within which ethical issues

related to the breach of confidentiality were judged (3). The argument

that the objective of medical confidentiality is perverted if it is

used to facilitate the intentional transmission of the disease gained

acceptance. It was deemed ethically permissible for physicians to

notify people whom they believed were endangered. Many US states

legislated that physicians were legally obliged to notify subjects at

risk of infecting third parties. However, civil liberty groups opposed

such disclosure by physicians without guidelines on which to base the

decision. The compromise between the opposing points of view was the

policy of the 'privilege to disclose'. For clinicians it offered the

freedom to make complex ethical judgments without the legal

obligation. The criteria suggested for disclosure were (3) (i) the

physician reasonably believes that notification is medically

appropriate and that there is a significant risk of infection; (ii)

the patient has been counselled regarding the need to notify partners;

(iii) the physician has reason to believe the patient will not notify

partners; and (iv) the patient has been informed of the physician's

intent to notify partners and has been given the opportunity to

express a preference as to whether the partners should be notified by

the physician directly or by a public health officer. Patient

confidentiality continues to be a central issue, even in those

subjects in whom the 'duty to warn' tradition has been invoked.

Persons unknowingly placed at risk, from an ethical perspective of a

clinical relationship, have a moral right to information in order to

protect themselves, seek testing and commence treatment if necessary.

Neither the principle of confidentiality nor the value attached to

professional autonomy is absolute. Early identification of HIV

infection in asymptomatic individuals has become increasingly

beneficial with the availability of antiviral therapy and prophylactic

antimicrobial agents.

Issues related to partner notification have been examined in detail

(7). The effectiveness of partner notification can be summarised as:

(i) many, if not most, HIV-infected individuals will cooperate in

notifying at least some of their sex partners of exposure to HIV; (ii)

sex partners are generally receptive to being notified and will seek

HIV testing; (iii) patient referral is probably not as effective as

provider referral in reaching sex partners; (iv) sex partners are

often unaware of or misunderstand their HIV risks; and (v) sex

partners frequently have high rates of HIV infection. However, many

programmes have poor results at tracing contacts and notifying

partners (8-10).

Issues in the developing world

Poverty and illiteracy complicate issues related to HIV infection. The

case for partner notification becomes more important with the

infection shifting to populations with low awareness and limited

capacity to act. The poor, the uneducated, and the unemployed require

special consideration and partner notification may be especially

important in these groups.

Resource limitations in developing countries makes partner

notification difficult. The labour-intensive nature of contact tracing

makes it a expensive option. This raises many policy questions. What

proportion of the efforts at prevention should be devoted to contact

tracing? Should limited resources be focused on educational and other

efforts at limiting the spread of infection? Regional variations

prevent the formulation of a universal strategy.

Lack of antiviral and other therapy available to individuals with HIV

infection in the developing world does not allow for treatment of

people with infection. Contact tracing will benefit uninfected

partners, but the high cost of therapy is beyond most infected and

asymptomatic partners.

The National AIDS Control Organisation's guidelines for HIV

counselling suggest that there may be situations permitting partner

notification, but they neither discuss the issues nor offer specific

criteria for disclosure (11).

The Supreme Court of India has ruled on issue of the right to

confidentiality of subjects with HIV infection and the breach of

confidentiality in order to protect the health of third parties (12).

The court's opinion was that the right to privacy and confidentiality

is not absolute; it may be lawfully restricted when third parties are

at risk. The judgment went on to state that persons with HIV infection

who knowingly expose others to health risk are guilty of an offense

punishable under law. The Court ruling maintained that HIV infected

subjects did not have a right to marry.

Non-governmental organisations and human rights activists have pointed

out that the law should look at the larger issues (13). They have

argued that the right to marry is constitutive of one's right to life

and that this right cannot be qualified on the basis of the health

status of the person. Consequently, the denial of the right to marry

to those who may be HIV positive is morally unsustainable. The Supreme

Court ruling questions the legal status of marriages with HIV positive

persons even when based on the informed, free and willing consent of

partners. These issues have been raised in a Public Interest

Litigation now before the Court.

Issues for community health programmes

Clinicians often do not know the patient's background and family

relationships. They need the patient's cooperation to obtain names of

contacts. The situation is different in comprehensive community health

programmes closely linked to small population groups with a detailed

knowledge of the local people. The public health staff are aware of

the subject's usual contacts (e.g. spouse). They are not only

accountable to those with HIV infection but also to those partners who

may not have the virus. Holding back information which has a direct

bearing on the health of the partner is ethically indefensible.

Maintaining confidentiality may be useful in obtaining the continued

cooperation of people with HIV infection. However, the absence of

partner notification within such programmes can antagonise the general

population. Such programmes will have to tread a fine line in order to

keep the interests of those with the infection and their partners in mind.

CHAD has diagnosed and managed 43 subjects with HIV infection since

the onset of the epidemic. Its initial response was to maintain

absolute confidentiality about a person's HIV status. The focus was on

a community education programme to increase the awareness of HIV/AIDS,

its mode of transmission and the methods of protection. With the

increase in the number of persons with HIV in the area there was a

realisation that the ethical issues were complex. The failure to warn

persons at risk, known to the public health staff of the programme,

was also ethically indefensible. It was also felt that not warning

unsuspecting third parties would jeopardise the programme's

relationship with the general population.

CHAD has since adopted the following guidelines for partner

notification: (i) The physician reasonably believes that notification

is medically appropriate and that there is a significant risk of

infection; (ii) the patient has been counselled regarding the need to

notify partners; (iii) the physician has reason to believe that the

patient will not notify partners; (iv) the patient has been informed

of the physician's intent to notify partners, and (v) partner

notification will not involve the disclosure of the identity of the

index patient (although these may be deduced in some cases).

The programme has been notifying partners at risk for contacting the

virus. Care is taken to minimise the risk of discrimination of people

with HIV infection. CHAD runs a regular AIDS awareness programme for

all the villages in the Block. AIDS awareness is also part of the

health education package at the monthly village antenatal clinics.

People with HIV and AIDS are not refused treatment because of their

infection either at the village clinics or at the base hospital. In

fact people with the infection who have medical and social problems

have a fast track access to medical and counselling staff. The health

aide responsible for the patient's village visits all HIV infected

people in her jurisdiction and their families at home every month. She

provides education and psychological support for patients and their

families. On occasion senior counsellors or senior doctors visit the

patient's home to sort out issues, educate and provide emotional

support. Those with persistent and clinically significant distress are

seen by the staff of a family counselling centre. The programme also

has a mental health initiative.

To date all subjects with HIV infection/AIDS in the Block have

continued to live with their families at home. No serious problems

have arisen either within the family or with the local community.

Frequent follow-up of people with HIV infection by the programme

staff, together with the policy of confidentiality (information on a

person's HIV status is shared with a limited number of staff on a need

to know basis), has helped prevent social isolation and discrimination

of patients and their families. Our initial experiences suggest that

the programme has been able to tread the fine line between the

interests of persons with HIV and those of their partners. The issue

of marriage among HIV positive adults or marriage after consent when

one partner is infected has not yet arisen in the local community.

Conclusion

As increasing numbers of persons with HIV infection come under the

care of clinicians and community programmes, the questions of

breaching confidentiality to warn unsuspecting partners will be faced

repeatedly in medical practice. Research and clinical experience

suggest that many individuals who know that they are infected fail to

inform their sexual partners of the fact. Clinicians will be

increasingly called upon to notify partners. Policy makers will have

to decide whether this process of notification should be

discretionary, as it is currently, or be made mandatory. The moral

claim of persons who have been placed at risk entails the correlative

moral duty of clinicians to ensure that unsuspecting partners are

informed. Comprehensive community health programmes will have to

develop policies for confidentiality and partner notification related

to HIV infection.

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(This article is an edited version of an article in the National

Medical Journal of India (NMJI 2000; 13: 207-212. Reprinted here with

cuts with the permission of the authors and the NMJI editors.)

Professor S. Abraham, Department of Community Health, Christian

Medical College, Vellore 632002 India.

Email: sulo@...