Why HIPAA doesn’t always protect abortion information


A journalist stories close to a crowd of abortion-rights activists in entrance of the U.S. Supreme Courtroom after the Courtroom introduced a ruling within the Dobbs v Jackson Ladies’s Well being Group case on June 24, 2022 in Washington, DC.

Nathan Howard | Getty Photos

The Supreme Courtroom’s determination to overturn Roe v. Wade final month raised concerns that data collected by tech companies and clinics could be used to criminally charge people who search abortions or expertise being pregnant loss.

Though the federal regulation often known as the Health Insurance Portability and Accountability Act, or HIPAA, protects affected person privateness, health-care suppliers can nonetheless be compelled to reveal affected person knowledge below particular circumstances, similar to a subpoena or a court docket order.

There’s additionally loads of knowledge that customers generate of their on a regular basis lives that will not be thought-about topic to HIPAA and might be used as proof in court docket towards individuals who allegedly sought abortions that violate state legal guidelines or towards their suppliers. Authorized consultants observe that search history, text messages, location data, and period-tracker apps could all potentially be used in court and in some instances have already got been.

Whereas some expertise corporations, similar to Google and the menstrual-cycle monitoring app Flo, have introduced steps to higher defend their customers’ reproductive health-related knowledge, the safety of customers’ knowledge largely stays on the whims of the companies they use within the absence of federal digital privateness regulation.

Nonetheless, some states, together with California and Illinois, have already got digital privateness legal guidelines that may assist safe client knowledge extra typically. Extra state-level proposals purpose to guard reproductive well being knowledge particularly, similar to Connecticut’s Reproductive Freedom Defense Act. That invoice might assist fill in some gaps in HIPAA whereas legislators in Congress proceed to push for nationwide privateness protections.

Right here is an summary of some present legal guidelines and proposals that might defend the data of pregnant individuals each on and off the web.

Well being Insurance coverage Portability and Accountability Act (HIPAA)

What it does: HIPAA is a federal affected person privateness regulation handed in 1996 that prohibits health-care suppliers and insurers from disclosing affected person info. It’s overseen by the Workplace for Civil Rights inside the Division of Well being and Human Companies.

Typically, HIPAA doesn’t enable abortion clinics or health-care suppliers to divulge to regulation enforcement officers whether or not an individual has had an abortion. If the state regulation prohibits abortion however doesn’t “expressly require” individuals to report it, an abortion clinic that stories affected person info to others can be in violation of HIPAA.

What info is not protected below HIPAA: HIPAA can not resolve all privateness considerations associated to reproductive rights. Based on recent guidance published by HHS, the regulation permits an abortion clinic to reveal who acquired an abortion in response to a court docket order or summons, which might change into much more widespread within the post-Roe period.

HIPAA solely applies to sure sorts of companies and professionals. It may possibly regulate solely well being insurers, health-care suppliers, knowledge clearinghouses and enterprise associates.

HIPAA cannot defend some affected person info gathered by anti-abortion organizations, similar to so-called disaster being pregnant facilities, that try to draw and redirect abortion-seekers. There are about 2,500 facilities throughout the nation, based on Crisis Pregnancy Center Map, a challenge led by lecturers on the College of Georgia.

My Physique, My Knowledge Act

What it might do: The My Body, My Data Act is a federal privateness proposal that targets companies that gather reproductive well being info. It could require corporations to get person consent earlier than amassing, retaining or disclosing reproductive well being knowledge until the information is “strictly wanted” to offer a service or product the person has requested. It could additionally require corporations to delete customers’ info upon request. The Federal Commerce Fee would have the facility to implement the rules.

What gaps it might fill: Whereas HIPAA primarily covers health-care suppliers, this invoice focuses on regulating expertise corporations and apps that gather reproductive well being knowledge.

Rep. Sara Jacobs, D-Calif., a co-sponsor of the invoice, informed The Washington Post that because it stands, with out such a regulation, it is attainable for “a right-wing nonprofit group [to] purchase all of this knowledge from the assorted period-tracking apps” and pinpoint each person “who needs to be pregnant proper now however just isn’t.”

How possible is it to go? Jacobs appeared to concede in her interview with the Put up that the invoice is unlikely to change into federal regulation, given the Republican opposition to increasing abortion protections. However, she stated, the federal invoice might encourage and be a mannequin for state-level actions.

Well being and Location Knowledge Safety Act

What it might do: This federal bill, launched by Sen. Elizabeth Warren, D-Mass., and different Democrats in June, would ban knowledge brokers from promoting location and health-care knowledge.

The invoice would give the FTC energy to implement the requirements round promoting well being and site info. It could additionally give state attorneys normal and people the facility to sue over alleged violations. The invoice additionally guarantees $1 billion in funding to the FTC over the subsequent decade to hold out its work, together with the enforcement of this regulation.

What gaps it might fill: Whereas the My Physique, My Knowledge Act primarily offers with the gathering of well being knowledge, Warren’s invoice focuses on regulating the sale of location knowledge. The proposal got here after Vice reported that knowledge brokers similar to SafeGraph had been promoting location knowledge of people that visited abortion clinics.

How possible is it to go? The invoice would possible want some Republicans on board to have an opportunity at passing, which is a tall order given the celebration’s normal opposition to increasing abortion protections.

State legal guidelines and proposals

Pennsylvania’s Safety of Pregnant People’ Info Act

What it might do: This invoice, introduced in May by Democratic state Rep. Mary Jo Daley, would prohibit so-called disaster being pregnant facilities from disclosing nonpublic well being info they’ve collected with out specific authorization.

What gaps it might fill: Recent reports have highlighted the data risks involved in visiting a crisis pregnancy center. Some pregnant individuals in search of abortions do not understand the facilities could not provide abortion companies and as a substitute attempt to dissuade guests from ending their pregnancies.

Federal lawmakers have called on Google to make it clearer to consumers that such facilities, which regularly have web sites designed to appear like these of abortion clinics, don’t provide abortions. Since these facilities are sometimes not licensed medical suppliers and provide free companies, they aren’t certain to federal well being privateness legal guidelines, Time reported, based mostly on conversations with privateness legal professionals.

The Pennsylvania invoice might make it tougher for these anti-abortion facilities to reveal info that in any other case falls on this unprotected space.

How efficient wouldn’t it be? The invoice nonetheless permits clinics to reveal nonpublic well being info with out authorization if the clinic is required to adjust to nationwide, state or native legal guidelines, or a court docket order or investigation. This might probably undermine the effectiveness of the protections.

Sanctuary state legal guidelines and proposals

What they’d do: A majority of these payments, handed or launched in a number of Democratic stronghold states, would make it simpler for pregnant individuals in search of abortions outdoors of their very own states to take action by safeguarding their info inside so-called sanctuary states. Which means if an individual in Texas seeks a authorized abortion in Connecticut, for instance, it might be tougher for Texas authorities to acquire info on that process.

The laws differs barely from state to state. Typically, these kind of payments search to forestall sure companies or suppliers of their states from having handy over delicate reproductive well being info to a different state in search of to prosecute an alleged abortion below its personal legal guidelines.

Which states have them: Two such proposals which have already been signed into regulation by Democratic governors are Connecticut’s Reproductive Freedom Defense Act and New Jersey’s Assembly Bill 3975 / Senate Bill 2633.

Related payments have been launched in California, Massachusetts and New York.

What gaps they’d fill: As of July 7, 9 states have already outlawed abortion, and 4 states could quickly go legal guidelines to ban abortion, based on Politico. Many individuals in these states could select to obtain abortion companies in protected harbor states similar to Connecticut whereas nonetheless going through authorized dangers of their residence states.

Which means this kind of laws might defend vacationers from states which have outlawed abortion from legal responsibility for receiving such companies in a state that has authorized abortion companies and safeguard legal guidelines.

How efficient they’d be? Whereas these legal guidelines will defend info on authorized procedures that occur within the states the place they exist, sufferers who dwell in states with restrictive abortion legal guidelines will nonetheless must be conscious of the place else their medical information could also be held.

“Think about that you’re in Alabama, and also you come to Connecticut and get an abortion, and then you definately go see some other physician in Alabama. We’re more and more in a world the place your medical report could form of observe you again to Alabama,” Carly Zubrzycki, a well being regulation professor on the College of Connecticut Faculty of Legislation, told the Verge.

Additionally, among the measures embody sure exceptions that might enable info to be handed over. For instance, New Jersey’s regulation permits exceptions below legitimate court docket orders or in instances the place baby or elder abuse is suspected in good religion. However within the latter case, it says reproductive health-care companies which are authorized in New Jersey shouldn’t be thought-about abuse.

WATCH: Bipartisan lawmakers debate new framework for privacy legislation

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