Throughout the summer, the New Jersey state legislature has been considering a bill that could, according to the New Jersey State Senate Democrats, put the state "at the forefront of the national fight against HIV transmission to newborns" – that is, enact a law that would require HIV testing of pregnant women and require HIV testing of newborns for mothers whose HIV status is unknown. Local newspapers in North Carolina, meanwhile, editorialized in favor of their state's Commission for Public Health's August vote in favor of mandating HIV testing for pregnant women who are ready to deliver and for whom there is no medical record of a previous HIV test.
Viewed one way, mandatory HIV testing for pregnant women is the "no-brainer" that New Jersey Senate President Richard J. Codey, co-sponsor of the bill, says it is – given that when women take anti-retrovirals during pregnancy, deliver by Caesarean section, and avoid breast-feeding, perinatal transmission can be cut to two percent, one can't imagine a better way to prevent HIV transmission to newborns than ensuring that mothers know their status – right? Except that, as Rose Saxe, staff attorney at the AIDS Project at the American Civil Liberties Union, has pointed out, mandating testing is not mandating treatment. Women who are forced to be tested will not necessarily seek out treatment, and cannot be forced to be treated for the disease or to take special precautions against transmitting the disease during pregnancy to the fetus. In fact, once you recognize the distinction between testing and treatment, and that testing amounts to a form of treatment, if an incomplete one, the counter-argument – that forced testing, like forced treatment, would amount to medical intervention without consent – makes the apparent "no-brainer" require some thought after all.
Proponents of New Jersey's testing law are quick to point out that testing would be "required" but, apparently, not mandatory – "While the testing is not mandatory, it will be readily available and physicians will be prepared to educate mothers on the benefits of testing," says Senator Loretta Weinberg, co-sponsor of the bill. The bill has, in various forms, passed both the State Senate and the Assembly and is working its way towards the Governor's office. While in the legislature, the bill was amended to allow women to opt-out verbally, and not require a written refusal. "Essentially we're moving from opt-in to opt-out," says State Senate spokesperson Jennifer Sciortino. "This is going to end up capturing more people."
But according to studies done in states that do have some form of opt-out testing for pregnant women, testing does not have to be mandatory to be involuntary. When Michigan implemented routine, opt-out HIV testing for pregnant women, a study examining the effects of the new law found that "fewer than half of the women felt very comfortable refusing testing, and one in five did not feel at all comfortable refusing HIV testing." Predictably, women who were unemployed, had fewer contacts with the health care system, and were younger were still less comfortable refusing the test. In Arkansas, which also has an opt-out testing program that doesn't require written consent, a study found that "16% of women tested did not even know that they had been tested for HIV." Without written consent, "…what they're calling ‘routine testing' will, in practice, be 'mandatory testing," Rose Saxe says.
And despite decades of public health efforts to reduce the stigma of HIV, the disease still presents unique challenges. Whether routine testing, regardless of the patient's risk profile, reduces stigma or is blind to the challenges of receiving an HIV diagnosis and irresponsibly treats HIV like any other disease is a point of heated debate. The hope that routine HIV testing might someday make the test seem unexceptional and the current reality that an HIV diagnosis can still carry with it discrimination and possible abuse seem irreconcilable, and the voices of those who seek out AIDS services invariably complicate the question. Forcing a patient to know her HIV status can have unintended consequences. After the North Carolina Commission on Public Health vote, Jacquelyn Clymore, executive director of the Alliance of AIDS Services Carolina in Raleigh, told the Raleigh News-Observer, "I have actually never met a pregnant woman through my work who said, ‘No, I don't want the test'…Mothers want the best for their babies." But, the article went on to say, "Occasionally, Clymore…encounters an expectant mother in an abusive relationship who fears finding out whether she has HIV because the abuse might escalate if her partner learns she is positive. That's rare, however."
A comparison of state laws by the Kaiser Family Foundation shows that Arkansas, Michigan, New Mexico, Texas, and Tennessee all require health care providers to test pregnant women for HIV unless the woman specifically refuses the test. Connecticut, Illinois and New York are the only states that test all newborns for HIV, according to the foundation. The New Jersey bill, sponsored by Senate President Codey, would require all pregnant women to be tested for HIV during their pregnancy and again in their third trimester. Each birthing facility in the state would also be mandated to test newborns whose mother's status was either unknown or known to be HIV-positive. The North Carolina requirement would have women who come into health care centers to deliver tested if there was not already an HIV test result on record for them. The Commission's vote must be approved by the state's Rules Review Commission before it is put into effect.
This latest spate of legislation and recommendation regarding testing during pregnancy is occurring in the wake of new guidelines issued by the Centers for Disease Prevention and Control in August of 2006 that would radically alter the way the disease is approached in American doctors' offices, hospitals, community-based health care centers, and other testing sites. The CDC recommended that rather than require that a physician obtain a separate, signed consent form prior to administering an HIV test, physicians should routinely test all patients aged 13 to 64 unless patients express opposition. Pre-test counseling focused specifically on the patients' individual risk factors and on risk reduction measures the patient could take would be dispensed with, while other elements of pre-test counseling, including, according to the ACLU, "providing information about HIV, the risks and benefits of testing, the implications of test results, how test results will be communicated, and the opportunity to ask questions," would be preserved. Within those guidelines, the CDC also specifically addressed testing pregnant women; the guidelines stated that HIV testing should now be included in the routine battery of tests a pregnant woman undergoes, and in order to avoid the test, a woman would have to specifically decline it. General consent to medical care would suffice as consent to an HIV test. And regardless of prior testing, women in their third trimesters would be routinely tested again in jurisdictions with an at least one case of HIV infection per 1,000 pregnant women per year.
After the CDC issued the new guidelines, civil liberties groups expressed concern that "opt-out" testing would the individual right of the patient to refuse treatment. And for pregnant women, the debate over mandatory screening plays out in particularly telling ways. The public health benefit is instinctively clear – not only diagnosing the mother, but in the possibility of preventing infection outright in the fetus. But establishing a right for the fetus to have the mother tested is dicey at best. "Testing during pregnancy, labor or right after birth, tests the woman's status, not the baby's, and thus should only be done with her informed consent – it shouldn't be mandatory," observes Jennifer Rudinger, executive director of the ACLU in North Carolina. "We would far prefer legislative efforts to increase access to comprehensive prenatal care – including HIV testing – during pregnancy, at a time when the woman can make informed decisions about her health, can choose to take certain medications during pregnancy, and can arrange ahead of time to have a C-section to reduce the risk of transmission." And the New Jersey bill, ACLU chapter executive director Deborah Jacobs, argues, "needlessly sacrifices the rights of women and parents" and "deprives women of their moral authority to make decisions for themselves and for children."
Opt-out testing laws tend to assume that laws to require specific consent, whether written or oral, and pre-test counseling deter individuals from agreeing to or seeking out an HIV test. According to a report prepared by the ACLU AIDS Project and Lambda Legal, this is a fictitious belief; the real reason people don't get tested, they claim, is that they don't feel that they are at risk. The ACLU/Lambda report also points out that if physicians are too busy to obtain written, informed consent from patients, they will likely be too busy to engage the patient in adequate post-test counseling, whether the patient tests positive or not. When in 2003, the CDC introduced a previous round of new testing standards, the agency acknowledged that physicians had a propensity both to being crunched for time and uncomfortable discussing sex and drugs with their patients – in other words, the patients' risk factors. "Because time constraints," the agency wrote when it issued its 2006 guidelines, "or discomfort with discussing their patients' risk behaviors…some providers perceive[d] requirements for prevention counseling and written informed consent as a barrier."
So which is it? Are providers too busy and embarrassed to do pre-test counseling, or are patients put off by the paperwork and the extra lecturing?
Groups such as the ACLU also say that patients who are tested because it is mandatory are less likely to be prepared for a positive diagnosis and seek follow-up care than those who choose to be tested. "The CDC should be commended for trying to increase the number of people tested for HIV, but eliminating the only safeguards that guarantee that testing is voluntary and informed does little to ensure that people will receive the care they need," says Saxe. "Studies have shown that patients who are tested without consent are less likely to get the follow-up care that is critical to maintaining good health."
As with many public health interventions, what at first seems self-evident in fact has layers of consequence. With the CDC-initiated changes afoot, advocates for pregnant women will have to watch closely to see how states balance, or don't, women's autonomy and HIV prevention.