Nebraska LB 285 and Consent to HIV Testing
In 1994, the HIV crisis was at its height, and confidentiality of HIV testing and test results was a grave concern. The Nebraska Unicameral enacted an unusual statute, requiring that no HIV test be administered without first obtaining the patient’s informed consent to the test. This was unusual because the special informed consent process was otherwise only required for invasive procedures with some level of risk. For most tests performed on blood specimens, health care providers rely upon a routine patient intake or admission consent form, recognizing that there is little risk involved in a blood draw.
Obviously, the world of HIV testing has changed significantly, because HIV is no longer the equivalent of a death sentence, and HIPAA privacy laws function more reliably to protect confidentiality of HIV testing and test results. So it makes sense that the requirement for informed consent to HIV testing has been eliminated by LB 285. However, other public health concerns have influenced this legal structure.
Since 1995, the Centers for Disease Control and Prevention (CDC) has recommended that all pregnant women be tested for HIV and, if found to be infected, offered treatment for themselves to improve their health and to prevent passing the virus to their infant. The CDC reports that, from among HIV-infected infants born in the 33 reporting states, 31 percent of the mothers of HIV-infected infants had not been tested for HIV until after delivery. Specifically, the CDC recommends that state laws create a presumption that pregnant women will be tested for HIV, on an “opt-out” basis.
In order to implement the approach recommended by the CDC, the Unicameral had to first eliminate the requirement for informed consent to HIV testing, initially adopted in 1994. LB 285 was signed by the Governor on February 28, 2018, so has been in effect for some time. However, there has been substantial confusion concerning the effect of two related statutes:
- Does the statutory authority allowing minors to obtain tests for sexually transmitted diseases without parental consent implicitly require that the minors sign an informed consent to HIV testing? No.
- Does the requirement that obstetrical practitioners order a test for HIV infection for their pregnant patients (unless the patient opts out) require the patient to sign an informed consent to HIV testing? No. Interestingly, the documentation suggested by the statute is an informed “refusal” form, to be executed by the pregnant woman who opts out of HIV testing. Such an informed refusal document should inform the pregnant woman of the risks to the child if HIV infection is not identified during the pregnancy and prior to birth.
During the floor debate concerning LB 285, the following exchange between Senator Crawford and Dr. Van Pelt (an OB/GYN) provided valuable insight into how opt-out HIV testing could be presented to a pregnant patient:
SENATOR CRAWFORD: I wondered if you could talk to us about what that verbal consent, what the consent looks like when it’s a panel of tests. So one of the previous testifiers indicated what the language was like if he was asking for verbal consent for someone for the HIV test alone. I think what you are . . . you and a couple other testifiers have talked about this being in a panel of tests. So when you’re interacting with a patient, I come in, what would you tell me, in terms of informing me about the tests that are in the panel, and ask me for my consent of that?
DR. VAN PELT: . . . So thank you for coming to our OB office; congratulations on your pregnancy. The first thing that we do is a blood draw, and that blood draw has your blood type, it tests your hemoglobin level, and it tests for several infections, including hepatitis, syphilis, and HIV. Is that okay to proceed with this test?
This method of presenting HIV testing as a part of routine prenatal blood testing is consistent with the following ACOG recommendation issued on August 22, 2018:
Screening should be performed after women have been notified that HIV screening is recommended for all pregnant patients and that they will receive an HIV test as part of the routine panel of prenatal tests unless they decline (opt-out screening). No woman should be tested without her knowledge; however, no additional process or written documentation of informed consent beyond what is required for other routine prenatal tests is recommended for HIV testing. Pregnant women should be provided with oral or written information about HIV that includes an explanation of HIV infection, a description of interventions that can reduce HIV transmission from mother to infant, the meanings of positive and negative test results, and the opportunity to ask questions and decline testing.
If a patient declines HIV testing, this should be documented in the medical record and should not affect access to care. In addition, the obstetrician–gynecologist or other obstetric provider should discuss and address the patient’s reasons for declining an HIV test. For example, a woman who declines an HIV test because she has had a previous negative test result should be informed of the importance of retesting during each pregnancy. Continuing discussion at future encounters and again offering and encouraging testing may increase rates of antenatal screening.
In addition to these two issues that have created confusion as a result of LB 285, the new statute calls for a review of your existing procedures for HIV testing processes. For example, as a result of LB 285’s elimination of the requirement of special informed consent to HIV testing in Nebraska, institutional providers should review their admission consent forms. Many hospitals have historically included language in these forms by which the patient addresses HIV testing, either consenting to the test on that form or reserving the right to separately consent. This provision is no longer necessary because special informed consent is no longer required for HIV testing. The provision concerning anonymous testing remains in the statute, so each health care provider in the position of ordering HIV tests should be prepared to inform a patient of locations where an anonymous test can be obtained.