A months-long investigation by the American Independent has uncovered that the Michigan Department of Community Health has been secretly collecting detailed demographic information for the people who take HIV tests at community clinics — a practice that has been going on for more than a decade, despite the fact that it raises serious privacy concerns about the way the state is handling sensitive health care information.

When Michigan residents get tested for HIV at a federally-funded community clinic, their information — including age, birth date, and potential “risk categories” for contracting the virus — is entered into a massive state database that stores it indefinitely, regardless of the outcome of the test. The state-owned data could even include the identities of people who have sexual relationships with HIV-positive individuals. There’s no way for a Michigander to remove their information from the system once it has been entered.

The Department of Community Health says they simply want to track the number of tests conducted with federal grant money, and state officials claim that the database “does not contain personally identifiable information.” But outside investigations have found that there’s not enough security to safeguard the sensitive information, and anyone who works for the health department is able to access it. In fact, some of Michigan’s local health departments are using the database’s information to build criminal cases against HIV-positive individuals who they want to prosecute for failing to disclose their status — something that represents a potential breach of civil liberties:

“There are certainly privacy rights involved, particularly when clients are not being told that the information they are providing is being put in a database which can be utilized to assist with criminal prosecution of people living with HIV,” said Jay Kaplan, staff attorney for the American Civil Liberties Union of Michigan LGBT Project. “It’s ironic that in its effort to try to prevent transmission of HIV as part of the HIV-testing process, this policy and practice will likely discourage people from being tested, because they fear criminal prosecution for having knowledge of their HIV status.”

Rose Saxe, from the National ACLU AIDS Project, also weighed in on the issue. She said the state is collecting confidential health information, but also “deeply personal information.”

“The state has a constitutional obligation to keep this information secure, and to protect the privacy rights of people testing for HIV,” Saxe told TAI in an email. “Because of the sensitivity of this information, the ACLU believes it is critically important that the state have in place policies to ensure that this information is used appropriately. This includes safeguards to prevent inadvertent disclosure, and ways to ensure that it is only accessed for legitimate reasons by health department employees. If the state cannot or does not undertake steps to protect this deeply private information about people in Michigan, it has no business collecting and storing it indefinitely.”

Several studies have demonstrated that criminalizing HIV is not an effective policy to combat rates of infection. In fact, just as the ACLU’s Jay Kaplan points out, those type of punitive laws can actually dissuade people from learning their status because they’re worried about facing legal action. They also serve to reinforce the lingering stigma associated with the virus. Nevertheless, 34 states — including Michigan — have adopted criminal laws based on perceived exposure to HIV.

The Presidential Advisory Council on HIV/AIDS (PACHA) has called for the repeal of criminalization laws across the country. Even if Michigan doesn’t throw out its HIV-specific criminal laws, it could take immediate steps to stop secretly collecting data to enforce those laws without its residents’ knowledge.

Transvaginal probe inserted into a women's vagina during an invasive ultrasound

“While I want to be sure women have access to the best technology available, I have absolutely no interest in forcing a woman to have a transvaginal ultrasound,” Bolger explained.

But if that’s something the Republican lawmaker is committed to, he might also want to condemn forced ultrasound bills as a whole — since even when that type of GOP-backed legislation doesn’t explicitly mandate a transvaginal probe, that’s often the end result. For the majority of women seeking an abortion within the first trimester of pregnancy, it’s too early for an abdominal ultrasound to be effective, so a doctor will have no choice but to use a transvaginal probe to fulfill the law.

And, of course, any measure that requires women to undergo an unwanted medical procedure — ultrasounds aren’t considered medically necessary for first trimester abortions — has nothing to do with ensuring women’s safety, health, or access to technology, regardless of the type of ultrasound equipment that is required.

(HT: TPM)

Example of a transvaginal ultrasound procedure

Virginia legislators ultimately changed the language of their ultrasound bill to remove the mention of transvaginal probes. But stringent abortion restrictions don’t necessarily need specific “transvaginal” language to force women to undergo invasive, unnecessary medical procedures against their will. These are just a few examples of carefully-worded abortion bills that would ultimately require transvaginal probes — even though it’s not explicitly stated in the legislation:

– MICHIGAN: Talking Points Memo first reported that Michigan’s proposed ultrasound bill, HB-4187, is a bit more nefarious than it appears to be on the surface. The legislation doesn’t mention trasvaginal probes, but it does stipulate that the mandatory ultrasounds need to use the most modern equipment available, and provide “the most visibly clear image of the gross anatomical development of the fetus and the most audible fetal heartbeat.” Donna Crane, the policy director of NARAL Pro-Choice America, explained that language will require doctors to use transvaginal probes — which provide clearer images than the non-invasive ultrasound procedure.

– KENTUCKY: Women seeking abortions in Kentucky already have to undergo a state-mandated waiting period and a mandatory counseling session intended to talk them out of their decision. But SB-5, which just cleared a Senate committee on Thursday, would also require women to have an ultrasound before terminating a pregnancy. During Thursday’s committee hearing, state Sen. Paul Hornback (R) admitted something that the proponents of similar ultrasound bills in other states haven’t been as forthright about: the legislation would also require a transvaginal ultrasound for early pregnancies, since abdominal ultrasounds don’t work well before 12 weeks of pregnancy. Because the vast majority of abortions are performed during the first trimester, the vast majority of women will be subjected to a transvaginal probe.

– ARKANSAS: Last week, State Sen. Jason Rapert (R) introduced a “fetal heartbeat bill” to outlaw all abortion procedures after a fetal heartbeat can be detected, which can occur as early as six weeks of pregnancy. Women’s health advocates pointed out that, since a transvaginal ultrasound is the only way to detect the fetal heartbeat that early into a pregnancy, Rapert’s bill would also mandate invasive probes for all women seeking abortions. The growing controversy over the unintended consequences of the stringent abortion ban led Rapert to amend his bill earlier this week — updating the legislation’s language to specify it would ban abortions after a fetal heartbeat can be detected by using an abdominal ultrasound, at around 10 weeks of pregnancy.

– NORTH DAKOTA: If Rapert’s heartbeat ban initially had the unintended consequence of mandating transvaginal ultrasounds, then the same holds true for the extreme fetal heartbeat bills that have been proposed in other states. For example, North Dakota’s HB-1456 states that “an individual may not perform an abortion on a pregnant woman before determining, in accordance with standard medical practice, if the unborn child the pregnant woman is carrying has a detectable heartbeat” — and transvaginal ultrasounds are the standard medical practice for determining a fetal heartbeat in early pregnancies.

Even though ultrasounds are not considered medically necessary procedures for first-trimester abortions, 12 states currently require women to undergo one anyway. And according to NARAL Pro-Choice America, 13 new forced ultrasound bills have been introduced in 8 states since the beginning of 2013, a number the group says is all too common for the beginning of a new legislative session.

Donna Crane, NARAL’s policy director, explained to ThinkProgress that Republicans are playing “games of hide and seek” with this type of legislation. But the issue of invasive probes — as well as the fundamental issue at stake, the fact that women are forced to have an unwanted, unnecessary medical procedure simply because a legislator decided they should — has never gone away. “These bills are horrific, but they’re commonplace,” Crane said. “All they’re doing is changing the language. Virginia made a PR error in actually using a searchable word, ‘transvaginal,’ and they’re not likely to do that again. But the bills are still as severe as they ever were.”

Example of a transvaginal probe

Transvaginal ultrasound bills, which require doctors to insert a wand into a woman’s vagina before proceeding with an abortion procedure, were introduced last year in Virginia and Alabama. Widespread public outcry — including considerable derision from the national media — forced GOP lawmakers to back away from the extreme legislation, but Talking Points Memo reports that Michigan lawmakers are now ready to revive the fight:

The bill requires the use of ultrasound equipment “providing the most visibly clear image of the gross anatomical development of the fetus and the most audible fetal heartbeat.” As a practical matter, that requires transvaginal ultrasounds, said Donna Crane, the policy director of NARAL Pro-Choice America.

“It does lay bare that the real motive is to make abortion providers continue to acquire more and more and more equipment before they’re even eligible to perform an abortion,” Crane told TPM. “They’re trying to make it harder for doctors to do their jobs.” [...]

Crane said NARAL and its allies are prepared to fight to sink the legislation.

“Women should be up in arms over these types of laws,” she said. “Unfortunately they’re not new. But the fact that politicians just went through an election cycle and got spanked over how they treat women and reproductive freedoms and still introduce bills like this really boggles the mind. It’s not clear that the sponsors haven’t been living under rocks since November.”

But unfortunately for the women in Michigan, this is hardly the only recent attack on their reproductive rights. Their lawmakers already capitalized on the lame duck session at the end of last year to push through extreme anti-abortion legislation that limits abortion access for women who live in rural areas, requires doctors to prove that mentally competent women haven’t been “coerced” into their decision to have the procedure, and enacts unnecessary, complicated rules for abortion clinics and providers.

Abortion opponents often use mandatory ultrasounds as a tactic to impose additional barriers to reproductive care, as well as convince women to change their minds about having an abortion. But they don’t work. Studies have shown that nearly 90 percent of women feel “very confident” about their decision to have an abortion before they approach a doctor, and forcing them to look at an ultrasound doesn’t change their mind.

Michigan Gov. Rick Snyder (R)

Implementing this aspect of President Obama’s health reform law will be particularly impactful in Michigan, where an estimated 470,000 uninsured residents will gain health coverage. The health policy groups that provided Snyder’s office with research about expanding Medicaid — including the fact that the state could save up to $1 billion over the next decade by accepting the federal funding to increase their Medicaid rolls — are welcoming the governor’s decision:

Snyder’s support for Medicaid expansion “really is a big deal,” said Marianne Udow-Phillips, director of the Ann Arbor-based Center for Healthcare Research & Transformation, which provided research to the governor’s office. CHRT concluded Michigan would save more than $1 billion in the next ten years as the federal government picks up the cost for health care for those who currently are not covered by insurance.

Moreover, most primary care doctors reported to CHRT that they are able to accept new patients who now would have insurance, she said.

“What’s really powerful about this is that the governor did come at this from a very objective, analytical approach,” she said. “He looked at the facts, he pulled research from our center and … lots of people,” Udow-Phillips said. “I don’t want to say we’re surprised, but we’re very pleased that the facts did speak for themselves.”

The state’s Medicaid expansion will still have to be approved by Michigan’s legislature, where conservative opponents of Obamacare could present a roadblock. State-level resistance to health care reform has considerably slowed the implementation of the Affordable Care Act — but, as Snyder joins the growing list of Republican leaders who are conceding that implementing Obamacare makes sense for their constituents, the tide may be about to turn.