FEU-NRMF

INSTITUTE OF MEDICINE • Discrimination based on handicap is illegal

Bioethics 2 • Immoral
Polly T. Chua-Chan, MD, MPH, MHA, FPAP • It is understandable to fear a deadly illness…
• This does not justify violent or discriminatory
BIOETHICAL ISSUES RELATED TO AIDS behavior against those infected
• Such behavior – denial of basic human dignity and
fundamental respect
• While an individual has the right – indeed, the
obligation – to avoid and protect himself from
unnecessary or reckless exposure to the infection,
this must not be done in a way that dehumanizes
those in our society already infected.

2) Confidentiality
• A basic principle of medical ethics – respect for
person à
- Patient: Right to privacy
- Physician: Obligation to confidentiality
• Problem:
- Conflict between the patient’s right of privacy
and either:
ü The public health concerns of responsible
medical authorities
In the early 80’s, doctors in New York and California began to report ü The right of the patient’s spouse or partner
patients with overwhelming and unusual opportunistic infections, “a to avoid infection
mysterious illness”. These patients are young, white males, • Foundations:
presenting with rare conditions which were only seen among - Revealing information, which is “private”, harms
debilitated individuals. Relatively rare entities like Kaposi’s sarcoma, a person’s dignity and is a violation of the
Pneumocystis carinii, extrapulmonary cryptococcosis, progressive principle of non-maleficence;
multiple encephalopathy, and candidiasis of the esophagus became Breaking confidentiality would deter patients in
indicator diseases for what is later termed as “Acquired seeking medical assistance.
Immunodeficiency Syndrome or AIDS”. - A special relationship exists between doctor and
patient, a relationship built on trust that would
Acquired Immunodeficiency Syndrome (AIDS) enable patient to look to the doctor for
• A disease of the human immune system caused by infection assistance without fear or betrayal.
with human immunodeficiency virus (HIV) - Patient’s right of self-determination which
• Characteristics: requires the control over privacy and personal
- Reduction in the numbers of CD-4 bearing helper T-cells information
- Result in opportunistic infections and illnesses (potentially • Exceptions:
life-threatening) - When the risk or danger of maintaining
confidentiality is greater than that of breaking it,
Human Immunodeficiency Virus (HIV) as when the patient or others are endangered,
• A retrovirus that causes immune deficiency and may eventually confidentiality may be broken. (Harm Principle)
lead to AIDS, especially if appropriate treatment is not used. - HIV-seropositive status and the diagnosis of
• “At the beginning of the fourth decade of the HIV epidemic, AIDS should be treated as any other disease; it
profound stigma and discrimination is a fact of life for those should be a part of the medical record.
with the disease – not just socially, but within our legal system.” ü It is not so much to protect health workers
- Sean Strub, HIV Activist since health workers are expected to
practice universal precaution at all times
AIDS and Health Care Practice regardless of the case…
• AIDS poses a full range of medical, sanitary, moral, and social ü …but more in being able to provide
concerns. One must not only think of preventing its spread but accurate diagnosis and corresponding
also the kind of medical attention and care that such patients treatment.
need.

Moral Dimension
A. Micro-ethical Concern – PATIENT Oriented
1) Discrimination
• Blame the victim syndrome: “It’s their own fault”
• Morally unacceptable:
- Sexual preference
- Sexual practice
- Lifestyle behavior (e.g. drug use)

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 Occupational Safety and Health Administration Guidelines, treatment of AIDS may also affect cerebral
1991 (Universal Precaution) functioning.
1. Wear gloves when it is likely that hands will be in contact with • Because of the gradual loss of competency due to
body substances.
these factors, the best way is to:
2. Protect clothing with a plastic apron or wear a gown when it is
- Appoint surrogate proxy
likely that clothing will be soiled with body substances.
3. Wear mask or eye protection when it is likely that eyes, and or - Appoint a legal guardian
mucous membranes will be splashed with body substances. - Issue advance directives long before the onset of
4. Wash hands often and well, paying particular attention to incompetence
fingernails and the area between the fingers.
5. Discard uncapped needles/syringe units and sharps in puncture- 4) Research
resistant containers. • Due to shortage of available therapeutic alternatives
6. If anticipated contact with body substances occurs, wash as
for AIDS, patient would like to avail of any possible
soon as possible.
medicine available including those that are still in the
7. Use gloves to wipe up after spills and disinfect using one part
bleach to ten parts water. experimental stage blurring the distinction between
research and treatment.
3) Obligation not to spread the disease • Since good ethics begins with good medicine, it is
• Because of the very nature of AIDS, it would be a clear that no physician need offer, or indeed,
grave injustice to deliberate and knowingly consider a therapy that is clearly useless.
communicate the disease to someone else. • If a particular treatment offers no possible benefit to
• The infected person must use every reasonable the patient, there is no obligation to offer it as an
means to avoid this. option.
• The moral issued surrounding AIDS are social justice
B. Micro-ethical Concern – PHYSICIAN Oriented issues rather than questions of sexual behavior.
1) Duty to treat • Public vs. Patient à Concern of the common good vs.
• The medical professional has entered a covenant with the rights and interests of the individual with AIDS
society to provide a service that inherently involves • Only a careful reflection on each issue will permit us
some risk. It involves a promise to act on all patients’ to judge which competing value should be chosen
behalf who seek that assistance. • Measures which purport to serve the common good
• Although of great concern due to the tragic but undermine individual dignity frustrate the basic
consequences of infection, the risk to health care good which public order strives to protect: the
provider seems to be very rare. human dignity of that society’s members.
- The use of universal precaution on all patients
should provide an effective barrier and reduce C. Macro-ethical Concern – COMMUNITY Oriented
the risk to an acceptable level. 1) Screening
Therefore, the limited risk to the practitioner would • Since there is no program for behavioral change, no
not provide a suitable rationale to refuse to treat treatment for asymptomatic seropositive patients,
patients but would create an obligation on the part and the disease is not casually transmitted, there is
of all health care workers to take appropriate no ground for mandatory screening.
protective action. • It should be done under conditions of voluntary,
• The care of the risk is at heart a moral enterprise informed consent after counseling of risks and
benefits.
2) Duty to inform if infected • Physicians should offer HIV testing to those with
• Center for Disease Control (CDC) recommends no increase possibility of infection, its only then that the
immediate cessation of practice. CDC estimates that patient would have the opportunity to decide.
the chance for transmission of the HIV by an infected • Mandatory screening is ineffective because there can
surgeon to a patient is about 1 in 41,600 to 416,000 be a six-month lag between infection and the
surgical procedures. This places the risk much lower development of antibodies that can be identified in
than that of driving cars or smoking cigarettes. the test. The test also provides a certain level of false
• CDC recommends instead that the practitioner positives, which have the potential of destroying a
communicate to the health department which is then person’s life.
charged with setting up an individual review of cases • Rigorously enforced infection control methods,
and a monitoring process. education campaign, and counseling programs would
- The review process would call for counseling of be more useful in protecting the society at large.
the infected practitioner and would rate the
danger to patients 2) Quarantine
• If it was decided that the infected practitioner posed • Belief that persons with AIDS seropositive individuals
a threat to patients, he would be advised to notify all should not mingle with the general population
affiliated institutions of his status. • Would isolation or quarantine be morally justifiable?
• Would there be enough space for detention?
3) Informed Consent
• One aspect of the informed consent is competence. It
is clear that the HIV attacks the CNS as well as the
immune system. Moreover, drug used in the

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 • In the absence of the actual commission of a crime or has had only a single partner, the identity of the index
a highly dangerous act will be committed à unethical persons may be able to be inferred;
to isolate or incarcerate an individual f) Be undertaken only when appropriate support services are
- Immoral available to index persons and partners; the minimum
- HIV is not casually transmitted requirements are counseling on the implications of having
been exposed to infection, the availability of voluntary,
3) Funding confidential HIV testing with pre- and post-test counseling
• Typically, most AIDS patients are hospitalized two to and appropriate health and social services; the quality of
three times during the course of the illness these services should be assured and regularly monitored.
• Each hospitalization costs 3x more than it does for the (WHO, 1989, p. 78)
average patient • The American Medical Association’s House of Delegates voted
• Who will pay for this health care? to recommend that the health officials of each community
• “Why should the public pay for the health care of establish contact-tracing programs. These programs would
individuals who freely assumed risk for disease alert sexual and needle-sharing partners of persons who test
through their behavior?” positive for HIV to the possibility that they could be infected
• Since in many cases the behavior is illegal… ("AMA Revises," 1990).
- We cannot extricate ourselves from the
problem. Presidential Commission on the Human Immunodeficiency Virus
- We must share the risk and the burdens, as well Epidemic (1988):
as the benefits. • Ethically, decisions about individual diagnosis, treatment, and
- We are a community care should not be made on the basis of socioeconomic
concerns, such as ability to pay, or more global concerns, such
as allocation of scarce health care resources.
• In addition, social prejudices of any type should not in any way
influence decisions on treatment. (p. 138)

Ethical issued that influence access to and use of HIV prevention
and care services
• Since the early 1980s, federal and state governments have
enacted several laws intended to protect the confidentiality,
rights, and autonomy of persons with HIV; promote access to
HIV prevention and care services; or prevent HIV transmission.
• Many relate to:
- authorized and unauthorized disclosure of HIV status
- discrimination protections
- autonomy in health decisions and rights to access
prevention and care services
• Providers who are aware of these issues are better equipped to
The Context of Prevention with Persons with HIV: affirm the rights and responsibilities of persons with HIV,
Essential Considerations for Providers encourage safer sexual and drug-use behaviors, and fulfill their
own legal and ethical obligations.
Protecting the rights and dignity of HIV-infected persons
• These providers are also more likely to direct patients and
• Partner notification as part of a comprehensive AIDS prevention clients to appropriate services, support public health practice,
and control program is acceptable only if the following and foster mutual respect and cooperation between persons
principles are adhered to. Partner notification should: with HIV, their service providers, and their communities.
a) Be in accordance with the Global AIDS Strategy and
national AIDS program goals; Authorized and unauthorized disclosure of HIV status by providers
b) Respect the human rights and dignity of the partners and of prevention and care services
the index person;
• Several federal and state laws protect the privacy and
c) Be a balanced part of a comprehensive AIDS prevention
confidentiality of persons with HIV.
and control program and be coordinated in the context of
• These laws have taken on greater importance as health
primary health care with other public health activities such
information and delivery of care have become more
as programs on sexually transmitted disease (STD),
collaborative, integrated, and networked and as teams are
maternal and child health, family planning and substance
more frequently used to manage the care of a person with HIV
abuse prevention;
or other complex, chronic conditions.
d) Be voluntary and not coercive, and index persons and their
• All 50 states and the District of Columbia require name-based
partners should have full access to available services
reporting of HIV cases and laboratory test results that confirm
independent of their willingness to cooperate with partner
HIV infection to health departments for HIV surveillance
notification activities;
purposes.
e) Be confidential, including written records, locating
• Most persons with HIV are legitimately sensitive about case
information for partners, and, in provider referral, the
reporting because of the risk of stigma, discrimination, and
identity of the index person. Nevertheless, in an occasional
other adverse consequences of unintended HIV disclosure as
provider referral situation such as where an index person
well as reported cases of inadvertent and

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 intended breaches of confidentiality. • Providers can take several steps to help patients and clients
• To protect confidentiality, all jurisdictions require health support safe, selective disclosure. They can review the health
departments to collect, store, use, and transmit identifiable and psychosocial benefits of self-disclosure and describe
HIV-related information in a secure manner effective disclosure strategies, such as choosing a safe, secure
consistent with HIPAA and state laws. place to make the disclosure; offering partners information
about where to obtain HIV testing; and anticipating and
CDC has issued standards for handling HIV surveillance data that managing negative reactions.
minimize uses that might reveal the identity of persons with HIV • They can also help persons engage partner notification
assistance from health department specialists who are trained
to assess risk of partner physical or verbal abuse.
• They can also provide information about local laws on voluntary
disclosure and make referrals to legal professionals who can
understand specific legal consequences of disclosure in the
jurisdiction.

Discrimination Protections for Persons with HIV
• The Americans with Disabilities Act (ADA) protects HIV-infected
persons, including those without AIDS-defining conditions, from
discrimination in employment, housing, education, health care,
and other settings.
• By guarding against discrimination in housing and employment,
the ADA can foster more stable housing, income, and lifestyles
• Use of confidential electronic medical records (EMRs)†† for that encourage safe behaviors and sustained access to HIV
managing patients with HIV has grown as a result of the Patient medical care and ART.
Protection and Affordable Care Act (ACA) and technology • Despite the privacy, confidentiality, and discrimination
innovations. protections promised by ADA, HIPAA, and other regulations,
• Once stripped of confidential information, data from these many persons with HIV choose not to disclose their infection to
record systems can also be used for legitimate quality others or forbid others to disclose this information because
improvement and monitoring purposes, such as revealing gaps they fear stigma, abuse, prejudice, discrimination, deportation
in the continuum of HIV care within medical practices and or criminal prosecution.
health systems • Although experts have long known that HIV cannot be
• Some states have “duty-to-inform” laws that obligate or permit transmitted through casual contact, concerns that persist in the
providers who know that a person has exposed another person general public can provoke negative reactions.
to HIV to notify the exposed person. • HIV-related stigma can compound stigma related to sexuality
• Providers may also be required or permitted to disclose HIV- (“homophobia” or “transphobia”), substance abuse, race,
related information to law enforcement authorities when ethnicity, and other characteristics that many populations
required for legal proceedings. heavily affected by HIV already face.
• Prejudice may manifest as anger, physical or verbal abuse,
Voluntary disclosure by persons with HIV offensive nonverbal cues, or social marginalization that
• State laws about HIV disclosure vary in scope and degree of devalues or discredits persons with HIV. This may cause
enforcement. Many require that persons with HIV notify their psychological distress, depression, and other mental health
sex or drug-injection partners, including spouses, after they problems that may erode safe behaviors, encourage substance
have received an HIV diagnosis. abuse, or lead to immunosuppression.
• Partner services specialists in many health departments offer • Social isolation may make it difficult to engage friends and
voluntary, confidential assistance to persons who want help family in supporting risk-reduction or ART adherence goals.
notifying their partners. Some persons who wish to avoid real or perceived stigma or
• Voluntarily disclosure of HIV infection status to providers has discrimination may defer HIV testing, care, and prevention
many potential benefits. It can foster open communication and services.
well-informed, shared decision making about HIV prevention • Other persons with HIV may be denied medical or dental care,
and care goals, and facilitate access to medical and social experience indifferent or substandard health care, or face
services that can improve health and reduce HIV transmission. housing or employment discrimination.
• Disclosure to partners may enhance intimacy and psychosocial • Yet others may decline to carry sterile drug-using equipment or
well-being and prompt frank discussion about using condoms, condoms in public settings if they fear that possession may
contraception, or sterile drug-injection equipment. increase the risk of charges of illegal drug use or commercial sex
• Disclosure to family and friends can engage support for ART work.
adherence or managing psychosocial problems.
• Disclosure can also empower persons with HIV to openly Implications of Not Disclosing HIV Infection Status
collaborate with organizations that seek input from persons • Between 1986 and 2011, 33 states enacted HIV-specific laws
with HIV that could be used to impose criminal penalties on persons who
• However, disclosure can also lead to negative outcomes, such knowingly expose others to HIV. These laws are controversial
as physical or verbal abuse, dissolution of relationships, and have been subject to intense public debate. Most were
criminal or civil sanctions for HIV exposure, or job passed before 2000, a period when the use of ART to reduce
discrimination for health care providers with HIV. HIV-related disease and HIV transmission was less prevalent. Of

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 these 33 states, 27 specifically criminalize behaviors that pose Autonomy in Health Decisions and Rights to Access Prevention and
a high risk of HIV transmission, including anal or vaginal sex, Care Services
prostitution, and donating blood, tissue, or body fluids. • The principles of autonomy in health care decisions and
Additionally, 25 states have laws that criminalize behaviors that informed consent are fundamental to providing HIV prevention
pose negligible or no risk of HIV transmission, such as spitting and care. Persons with HIV have the right to accept and decline
or biting. prevention and care services, even if these services might lower
• Many of the 33 states specifically criminalize behaviors when their risk of exposing others to HIV or their infectiousness.
persons have not disclosed their HIV infection to sex partners • For example, the U.S. Department of Health and Human
(24 states) or drug-injection partners (14 states). Few of these Services (HHS) recommends that ART be offered to all persons
laws allow defendants to claim use of ART, condoms, or other with HIV to treat and prevent HIV-related disease and to reduce
prevention measures in their defense against criminal liability. the risk of HIV transmission but only be prescribed to those who
In 28 of these 33 states, violations of HIV-specific criminal laws are ready and willing to adhere to the regimen on a long-term
are classified as felonies and prison sentences can range from 1 basis.
to 20 years. • Health department partner notification services are also strictly
• In 3 states that do not impose criminal sanctions for HIV voluntary.
exposure, a person’s infection status may increase the severity • In most states, minors may consent to HIV-related services, STD
of sentencing or be considered an aggravating factor if the testing, and reproductive health services without parental
person is prosecuted for a related crime. consent.
• Some states have also used general criminal laws (e.g., assault, • Many low income persons with HIV obtain free or subsidized
battery, reckless endangerment, or communicable disease care through Medicare, Medicaid, and the Ryan White
laws) to prosecute persons accused of exposing others to HIV. HIV/AIDS Program based on income, disability, or other
• National databases cannot readily estimate the number of characteristics. Increases in insurance coverage prompted by
state-level prosecution, arrests, or plea agreements related to the ACA, increased eligibility for Medicaid for low-income
these HIV-specific criminal laws. However, one evaluation of persons in many states, and continued funding of flagship HIV
186 arrests or prosecutions related to HIV from 2008 to January care programs, such as the Ryan White HIV/AIDS Program, are
2014 found that about 80% occurred under such laws. expected to improve access to HIV prevention and care
• Many HIV criminalization laws were enacted with the services.
expectation that awareness of these laws would encourage • However, demand for government-funded services may
persons with HIV to disclose their infection status and avoid outstrip available resources in the short-term as the number of
behaviors that would result in HIV exposure. persons living with HIV increases, more effective treatment
• However, studies have shown that many persons with HIV are increases their lifespans, and socioeconomic disparities in the
unaware of HIV disclosure requirements and exposure laws burden of HIV persist. This situation raises ethical questions
until they are notified by a provider and that 25%–50% of about rights to health care if persons with HIV do not receive
persons with HIV served by community-based organizations basic prevention and care services or receive them only after
may not be aware of HIV criminalization laws in their state. harmful delays
• Health professionals and staff of health departments can play a • For example, until 2014, many states were unable to provide
valuable role in informing persons with HIV about legal subsidized ART to all eligible persons due to long waiting lists
requirements about disclosure and referring clients and for the AIDS Drug Assistance Program (ADAP). Some clinical
patients to legal resources if prosecution is possible; however, settings§§§ are unable to promptly offer HIV medical care to all
they cannot provide legal counsel. recently diagnosed persons because of appointment backlogs,
• These professionals can also help persons to engage health lack of qualified health care providers, or delays in patient
department partner notification assistance (especially if enrollment in health insurance or medical assistance programs.
physical or verbal abuse is possible) and to prevent exposing • Some health departments that handle a high volume of HIV
others to HIV in the future. case reports cannot promptly offer partner services to all newly
• The impact of HIV criminalization laws on HIV disclosure, use of diagnosed persons when staffing for this core public health
health department partner services, or HIV transmission is not service declines.
known. However, several studies have concluded that these
laws may not deter HIV risk behavior and may cause significant Retention and Reengagement in HIV Medical Care
or unintended harms. • Providing linkage and retention services usually requires
• Harms may include resistance to HIV testing and self-disclosure sharing HIV test results and other identifiable health
or forcing persons to choose between the risk of prosecution information between agencies; this process must protect the
for undisclosed sexual HIV exposure and the risk of intimate confidentiality of persons with HIV and comply with health
partner violence after disclosing their HIV infection. information security standards, including the Health Insurance
• For these reasons, the 2010 National HIV/AIDS Strategy (NHAS) Portability and Accountability Act75-77 (see Section 3, Context
stated that it may be appropriate for legislators to consider if of Prevention).
existing criminalization laws in their jurisdictions advance the • CDC provides guidance on how health departments might use
public’s interest and health. HIV surveillance data (e.g., dates of HIV diagnosis, first and
• Some health policy experts have proposed revising these laws follow-up CD4 cell count test results and viral load test results)
to limit prosecution to persons in whom intent to harm (e.g., to identify persons who might benefit from linkage or retention
sexual assault) or high risk of intentional transmission has been assistance if allowed in their jurisdictions.
demonstrated (e.g., practicing prostitution without using
condoms)

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Antiretroviral Treatment for Care and Prevention states do not authorize legal access to sterile equipment
• Use of ART for health or prevention benefits should be through medical care providers, pharmacists, or SSPs.
voluntary. The principal consideration in decisions about using
ART is personal health, not reducing risk of HIV transmission. HIV Partner Services
Clinical providers can help patients make informed choices • Well-implemented partner services balance the interests of
about ART use by stressing that ART is the single most infected persons, their partners, and the community. Because
important intervention they can choose to maintain their partner services are voluntary and confidential, it is unethical to
health, prolong their lives, and reduce the risk of infecting coerce, deceive, or withhold information from index patients
others; noting potential harms, such as side effects; and when attempting to elicit partner information or notify
reassuring patients who decline ART that they will not be partners.
denied medical or social services. • Index patients who feel pressured to provide partner
• This principle of autonomy also applies to HIV uninfected information may not provide accurate partner information.
persons offered PrEP or nPEP. Several studies show that most persons with HIV, their
• Clinical providers who caution patients that sustained high partners, and their health care providers accept partner
adherence to ART substantially reduces, but may not eliminate, services, including the involvement of health departments and
the risk of transmission may discourage risk compensation, Internet-based partner notification, and consider partner
which may lead to deferral of condom use or other safer sex or services a valuable service rather than an imposition.
drug-injection behaviors. • Developing standard referral procedures and interagency
• Patients who alert partners about this limitation of ART may agreements that protect confidentiality may improve the
reduce partner distress and disputes if transmission should acceptability of partner services and improve communication
occur. and collaboration between HIV testing providers and health
• HIV-uninfected persons who use nPEP or PrEP also can benefit departments.
from knowing that these regimens may reduce, but may not • State and local laws and public health regulations generally
eliminate, their risk of HIV acquisition. protect the confidentiality of all HIV and STD information,
including information obtained from or about index patients.
Antiretroviral Treatment Adherence • Persons who fear that partner notification might cause stigma;
• Concerns about confidentiality, stigma, and social disapproval provoke physical or verbal abuse; harm relationships; or expose
and nondisclosure of HIV infection status are associated with illegal activity may choose confidential partner notification
low adherence. Some persons may be reluctant to carry or (that does not reveal the identity of the index patient) over self-
display their ART in public or to seek adherence support from notification.
others if they fear legal consequences or deportation. • Confidentiality is subject to practical limits when a person has a
• A study of more than 1,800 persons with HIV in North America single, identifiable partner and when couples seek joint HIV
found that those living in areas where transmitting or exposing testing and post-test counseling.
others to HIV was a crime reported lower adherence compared • Although there is growing interest in couple-based HIV testing
with persons living in other areas. Providers can assess and counseling after joint consent, some providers hesitate to
adherence in a nonjudgmental manner, stress that adherence offer this service because of concerns about violating HIV-
information is confidential, explain the relation between related confidentiality protections.
adherence and viral load, and help persons with HIV find • Despite the longstanding practice of confidential health
practical adherence strategies. department partner services, some clinicians, HIV testing
• These strategies may encourage patients to honestly disclose providers, and persons with HIV may be unaware of or doubt
their adherence levels, to admit adherence challenges, and to these confidentiality protections.
set realistic adherence goals. Several studies have also shown • Some individuals and communities do not favor health
that persons who share decision making about ART adherence department access to personal health information for public
goals with their clinical providers have higher adherence. health purposes because they distrust public health authorities
• This approach respects the patient’s autonomy while using or fear the information might be stigmatizing, provoke negative
clinical input about the levels of adherence needed to achieve partner reactions, or have legal ramifications.
treatment goals. • Nevertheless, real or perceived breaches of confidentiality
during provision of partner services appear to be rare. Several
Risk Screening and Risk-reduction Interventions studies conducted from the late 1990s to 2011, most of which
• Laws about HIV confidentiality protections, HIV disclosure, and involved heterosexual partners, found that the risk of violence
duty to inform others about possible HIV exposure vary by due to partner notification was low and that partner
jurisdiction. notification itself did not increase rates of partnership
• Providers who are aware of these laws are better equipped to dissolution.
fulfill their own obligations to notify persons of possible HIV • Some jurisdictions have laws that require or allow public health
exposure and to inform persons with HIV about their rights and officials or health care providers to notify partners who may
responsibilities regarding HIV disclosure. have been exposed to HIV infection, even when index patients
• In some jurisdictions, persons with HIV may hesitate to carry object.
condoms or sterile drug-injection equipment in public settings • Persons who misunderstand these laws may believe that all
if possessing these devices could result in charges of illegal sex partner notification is mandatory or non-confidential.
work or drug use. • To minimize negative attitudes about partner services,
• Laws about the distribution and prescription authority for providers can reassure index patients that partner services are
sterile drug-injection equipment vary by jurisdiction; some strictly voluntary and confidential, are usually provided at no

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 cost to index patients and partners, and are deferred if there is • Routine use of opt-out testing during prenatal care has
a risk of partner retribution. increased the number of women who receive prenatal HIV
testing and gain access to perinatal HIV prevention strategies.
Sexually Transmitted Disease (STD) Preventive Services • The number of adolescents using HIV testing services also
• State laws generally protect the confidentiality of HIV and STD increased in several states after they suspended parental
information reported to health department surveillance consent requirements
programs that may activate voluntary, confidential health • Nevertheless, cases of perinatal transmission continue to occur
department partner services. in the United States, primarily in women who are exposed to
• Nevertheless, some persons with HIV who are diagnosed with HIV or diagnosed with HIV infection after pregnancy is
an STD may feel anxious about providers reporting cases to recognized or who decline services that prevent perinatal
public health authorities or notifying sex partners because an transmission.
STD diagnosis in a person with HIV is an objective marker of • Some women may defer HIV testing or prenatal care if they
unprotected sexual activity that may result in HIV or STD believe that information about maternal HIV infection, sex
transmission. work, or substance use may influence child custody decisions or
• In some jurisdictions, duty-to-inform regulations require or provoke partner abuse.
allow providers to inform sex and drug-infection partners of • When providers notify pregnant women who have declined
possible HIV or STD exposure, particularly if the person with HIV prenatal HIV testing that their newborn’s HIV positive test
was aware of their infection before the activity or the activity results indicate maternal infection, they should offer these
was not consensual. women voluntary HIV prevention and care services but respect
• Some persons with HIV worry that HIV or STD case reporting by their right to decline them.
laboratories or providers or partner notification might breach • These services include HIV testing, HIV medical care, and social
confidentiality or, in the case of minors, prompt unwanted services that may influence future decisions about HIV testing
parental notification. or infant care (e.g., counseling about how to avoid abuse by a
• Health departments use methods similar to health care partner who may become violent after learning of the infant’s
providers to rigorously protect personal health information and HIV infection status).
maintain the confidentiality of surveillance case reports that • Providers who are familiar with state laws about maternal and
can activate voluntary, confidential health department partner infant testing, case reporting, HIV disclosure, and protocols for
services; however, they may release personal health confidential exchange of health information are in the best
information if subpoenaed or if required to enforce duty-to- position to address these concerns while respecting patient
inform statutes. autonomy about HIV testing.
• Providers who are aware of and adhere to laws and regulations • A woman’s decision to use antiretroviral medications during
about minors’ rights to access and consent to confidential STD pregnancy is voluntary and must honor her autonomy. This
preventive services are better equipped to serve and protect decision may weigh considerations of fetal or newborn safety;
the privacy rights of minors. pregnancy-related conditions, such as nausea; medication
costs; and other factors.
Reproductive Health Care for Women and Men • ART adherence may be especially challenging for pregnant
• Laws and regulations about consent, confidentiality, parental women who face the many physical and psychological changes
disclosure, and disease reporting for minors who seek family of pregnancy and newborn care. Providers can encourage
planning, pregnancy termination, or other sexual and pregnant women to stand and maintain high adherence to ART
reproductive health services vary by jurisdiction. Some states regimens that are safe during pregnancy by offering
permit minors to receive a wide variety of sexual and information about how to manage side effects and how to
reproductive health services without parental consent. obtain affordable ART through insurance, the AIDS Drug
• Providers who discuss sexuality, sexual behavior, and Assistance Program (ADAP), or other drug assistance programs.
reproductive choices using a neutral, nonjudgmental style may
elicit accurate information and foster autonomy in health Services for Other Medical Conditions and Social Factors that
decisions. Motivating persons with HIV to use sexual risk- Influence HIV Transmission
reduction methods decreases the risk of exposing partners to • Referrals to specialty services usually require the exchange of
HIV and the negative reactions, conflict, and legal disputes that confidential health information. Persons with HIV may be more
may follow. willing to respond to a referral recommendation when
providers seek explicit informed consent and describe measures
HIV Prevention Related to Pregnancy to maintain confidentiality during the referral process, such as
• State laws about HIV testing during pregnancy vary and are the Health Insurance Portability and Accountability Act and
guided by principles of voluntary testing. state or federal confidentiality standards specific to HIV.
• Most states allow an opt-out approach. Others require written
informed consent, special patient education, and medical Quality Improvement and Program Monitoring and Evaluation
record documentation before HIV testing. • Several organizations have issued guidance about policy, legal,
• Regardless of the consent method, all states require that and ethical factors that influence HIV related QI and M&E. This
pregnant women should be aware when HIV testing is being guidance addresses sharing health information, protecting
performed, receive information about the test, and understand patient confidentiality, using HIV-related surveillance and
that they can decline testing without the risk of being denied clinical data for QI and M&E, balancing data collection burdens
medical care. with program benefit, maintaining integrity when evaluating
publicly funded programs, and respecting staff and client time
and privacy.

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