HIV Law Project
Guiding Principles for HIV Testing
HIV and Testing
women who were not provided information
about HIV by their healthcare provider were four
times more likely to refuse testing than other
women.2 Also, since the implementation of New
York State regulations requiring informed consent
for prenatal testing, voluntary testing rates
increased by 13%.3 In effect, routine HIV testing is
most successful when accompanied by
informational counseling, and explicit provider
endorsement of testing.
In the fight against HIV transmission, increased
emphasis has been placed on the importance of
HIV testing. HIV testing protocols must balance
the sometimes competing demands of civil and
human rights concerns with public health
directives, all while ensuring that the relationship
between patient and health care provider
remains strong. The U.S. Center for Disease
Control and Prevention (CDC) estimates that
approximately one in five of the people living with
HIV in the United States are undiagnosed.
Accordingly, the CDC recommends that health
care providers offer testing to all persons aged
13-64 regardless of perceived risk. Early detection
of HIV positive individuals is essential in helping
prevent the spread of HIV. In pursuit of this goal,
HIV Law Project supports voluntary testing
throughout the general population as part of
routine medical care. The following are key
elements and guiding principles for a successful
and principled HIV testing program.
Rejecting Mandatory & Opt-Out Testing
Mandatory testing, as well as opt-testing1,
sacrifice basic patient and human rights, while
also jeopardizing the doctor-patient relationship.
When this relationship is undermined, health care
outcomes are negatively affected. Both
mandatory and opt-out testing disincentivize
health care providers from informing patients
about HIV prevention, transmission. By abridging
communication, these testing schemas fail to
address patients’ very real need for information
from their provider. As a result, the silence that
perpetuates the spread of HIV goes unchecked.
Thus while mandatory and opt-out testing
schemas may raise testing rates, they may
ultimately fall short as HIV prevention strategies.
In fact, a recent study found that pregnant
1
In an opt-out testing schema, medical providers
perform an HIV test after notifying the patient that the
test will be performed unless s/he explicitly declines
testing.
Routine, Voluntary HIV Testing
In order to reach the significant number of people
living with undiagnosed HIV, health care providers
should offer HIV tests universally, as part of
routine health care. Testing programs that target
“high risk” populations not only reinforce stigma
and negative stereotypes, but also exclude from
testing large segments of the population,
particularly women, who routinely fall outside of
standard risk categories. The routine offer of an
HIV test serves to destigmatize HIV. It is also an
opportunity for health care providers to discuss
HIV risk transmission and prevention with their
patients and to explicitly endorse the testing
process.
Written Informed Consent
Successful provider-patient relationships depend
on trust. Establishment of that trust depends on
respect for patient autonomy. In order for
patients to make informed decisions, they must
be given adequate information in terms that
2
Aynalem, G., Medoza, P., Frederick, T., et al., “Who
and Why? HIV-Testing Refusal During Pregnancy:
Implication for Pediatric HIV Epidemic Disparity.” AIDS
and Behavior 81 (2004) 25-31.
3
In 2000, 90% of HIV-infected women giving birth
knew their HIV status prior to delivery, up from 77% in
1997 prior to the passage of the regulation. Pulver,
Wendy, Glebatis, Donna, Wade, Nancy, et al. “Trends
from an HIV Seroprevalence Study Among Childbearing
Women in New York State From 1988 Through 2000.”
Archives of Pediatrics & Adolescent Medicine 158
(2004): 443-448.
HIV Law Project
Guiding Principles for HIV Testing
make sense to them. Providing individuals with
information about HIV, the testing process, and
its implications ensures patient autonomy, as
represented in the consent process. Written
consent is a safeguard to ensure that the patient
has affirmatively chosen testing, and has acted
free of coercion. In recognition of “the potential
consequences of an HIV test on an individual’s
job,
housing,
insurability,
and
social
relationships”, the American Medical Association
advises that physicians should secure informed
consent specific to HIV testing.4
beneficial to themselves and to the public health,
including consenting to an HIV test.
Confidentiality
Due to the stigma and discrimination associated
with HIV, testing must be confidential or
anonymous to protect the individual’s right to
privacy and encourage testing.
Pre-test Counseling
Pre-test counseling is an essential element to any
HIV testing program. Effective pre-test counseling
includes preventative education and an
explanation about the significance of positive and
negative test results, including the possibility of a
false negative result and its implications. Pre-test
counseling assures that all patients are informed
about the benefits of testing and the voluntary
nature of the test. Pre-test counseling also
fosters necessary trust between medical
professionals and patients and can positively
impact testing rates. Patients who perceive that
their doctor considers testing to be very
important are more likely to consent to a test.5
Also, informed patients are better able and more
likely to make health-related decisions that are
4
American Medical Association, “The Code of Medical
Ethics: Opinion 2.23 - HIV Testing” (1994). Available at
http://www.ama-assn.org/ama/pub/physicianresources/medical-ethics/code-medicalethics/opinion223.shtml
5
Royce, R., Walter, E., Fernandez, I., et al., “Barriers to
Universal Prenatal HIV Testing in 4 US locations in
1997.” American Journal of Public Health 91 (2001)
727-733
Post-test counseling
Simply communicating test results is insufficient.
Individuals who test positive must be given the
information and tools they need to make sound
medical decisions, and to ensure their safety and
security after diagnosis. Post-test counseling
should provide information about treatment
options, additional counseling services and other
relevant social services. This paves the way for
effective and seamless care provision.
A negative HIV test result also warrants post-test
counseling.
Under these circumstances,
counseling allows an individual with a negative
test result to discuss HIV risk as well as prevention
strategies, and is an opportunity for the health
care provider to refer the patient to any
appropriate social services. Healthcare providers
should also address the possibility of a false
negative result, prevention measures, and
whether retesting may be appropriate.6
Linkage to Care & No Denial of Care
Any individual who tests positive for HIV should
be connected with health care and should be
guaranteed care and necessary treatment,
regardless of income level or immigration status.
Further, no individual should be discriminated
against or denied healthcare based on HIV test
results.
6
After HIV infection there is a brief window period
when antibodies are undetectable. The CDC
recommends retesting for individuals who may have
been exposed to HIV approximately three months after
the possible exposure to rule out a false negative
result.