Congress’ internet privacy pullback has implications for health journalists, consumers

Rebecca Vesely

About Rebecca Vesely

Rebecca Vesely is AHCJ's topic leader on health information technology and a freelance writer. She has written about health, science and medicine for AFP, the Bay Area News Group, Modern Healthcare, Wired, Scientific American online and many other news outlets.

William Iven via Unsplash

The U.S. House of Representatives on March 28 voted 215-205 to eliminate Obama-era consumer protections that bar internet service providers (ISPs) from using and selling information about customers’ online habits, including health and financial data.

The resolution passed the Senate 50-48 the week before, with the White House issuing a statement in full support.

Many ISPs, including Verizon and Comcast, have said that overturning the rules is important because it levels the playing field with so-called edge internet companies such as Facebook and Google, which do not have the same restrictions on collecting, using and sharing customer data.

However, privacy and consumer advocates warn that ISPs are not the same as edge providers because there are typically few choices in carriers and consumers cannot “opt out” in the same way they can opt out of sharing on social networks and search engines.

For reporters on the health beat, the overturning of such protections has consequences. First, it means that reporters’ internet browsing, financial, health and shopping information is less private. Second, it means that patients have fewer online privacy protections, experts said.

“It undermines people’s access to information about their health,” said Jessica Gonzalez, deputy director and senior counsel at Free Press, a not-for-profit media and Internet freedom advocacy group.

For example, a customer’s online habits and information about personal health topics, drugs and medical conditions could be obtained by pharmaceutical companies, health insurers or other players in the health care industry.

“That information could be sold to insurers making decisions about your coverage,” Gonzalez said. “There are no HIPAA privacy protections. Your ISP could know more about you or your family’s health conditions than you do.”

Net neutrality implications

Health care reporters also should be aware of possible changes to net neutrality rules regulated by the Federal Communications Commission (FCC). Net neutrality protects equal internet access and speeds, with no fast or slow lanes and no blocking of any legal material.

However, FCC Chairman Ajit Pai has signaled that his agenct could relax the rules on net neutrality created in 2015 to protect an open Internet. Gonzalez said that FCC also could stop enforcement of these rules.

Without net neutrality, there’s “no recourse and no accountability” for providers that decide to charge more for faster service or put some users in a so-called slower lane, she said.

Loss of net neutrality may have a profound effect on the health sector. The health care industry has become more electronically interconnected, with increased used of the Internet enabling patient home monitoring, telehealth visits and secure electronic communication with one’s personal physician.

An internet that is not open and neutral also could affect the reach of media. “The whole notion behind net neutrality is independent voices, independent information and that independent applications and services have just as much of a chance of reaching users whether they are sent out by large pharma companies or by journalists,” Gonzalez said.

What’s more, changes to net neutrality rules could inadvertently exacerbate health disparities. An estimated one-third of Americans do not have reliable access to the Internet. The FCC in March 2016 modernized its Lifeline program for low-income consumers to allow those eligible to use the program’s longstanding phone discount for either phone services or (for the first time) Internet access.

Revocation of the net neutrality rules may have a chilling effect on the Lifeline service, Gonzalez warned. “Lack of reliable internet tracks closely with other disparities across the country, including disparities in health care and education.”

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Additional resources

Editor’s note: AHCJ will offer a workshop on security for journalists at Health Journalism 2017. Bring your laptop and phone for hands-on training in encryption, secure drop boxes, secure email and texting, and other ways to stay safe.

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