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Legislation being pushed in both the House and Senate would create a mandate for healthcare providers to put everyone’s personal medical information into a statewide information database called ImmPRINT. Alabama’s Department of Public Health is behind the push for this mandated reporting system, but public outcry over privacy concerns has halted the bills’ advancement.
Last Wednesday, Sherrie Saunders (representative of Alabama Medical Freedom Alliance), attended a public hearing before the House Health Committee. She explained how government-monitored databases, like the one this bill would create, have negatively affected her own life in many ways.
Saunders said that she was recently denied a life insurance policy when the insurer refused her coverage due to information contained in her private medical records.
“When you’re sharing medical information with other agencies or associations outside of what your own medical provider can view, it affects families in areas they never would have expected,” she said.
Several members of the public also spoke out about the violation of privacy this bill would create, because there is no allowance for a patient to opt-out of their information being entered in the database and there is no disclosure to patients about who has access to the information.
Alabama Outreach Collaborative, a grassroots movement dedicated to empowering communities through fair legislation, is focusing on the unintended implications of big data collection by government monitoring programs.
In their latest feature titled “Data Collection Facilitates Discrimination,” Outreach Director Helen Underwood reveals how data-sharing programs increase socioeconomic disparity.
“The problem with big-data collection by the government is that we have no way to consent to it because they’re the government, and there are very little laws that actually protect the public’s rights. Any restrictions we have in place to limit the reach of private-sector data collection, like HIPAA, do not apply to public authorities like the Department of Health. There is a growing mistrust of America’s healthcare industry right now, and hijacking Alabamians’ medical information through unconstitutional public policy is not the way to get back in our good graces,” Underwood said.
It is not just the public raising their voices in collective concern over these bills, either. Members of the Republican Executive Committee drafted a resolution that opposes legislation like HB103/SB56 on the grounds of government overreach and privacy concerns.
A vote on the issue was set to take place last Saturday at the committee’s semi-annual conference, but a mix-up in the order of parliamentary procedures resulted in an early adjournment, thwarting any open discussion among the party.
As of today, Sen. Tim Melson has said that he no longer is pursuing SB56 and that the bill “is dead as far as he’s concerned.”
Its House counterpart, HB103, is still being carried by Rep. April Weaver, who sits on the House Health Committee.
Alabama Outreach has submitted an amendment to legislators that would add opt-out and disclosure language to the bill.
“Informed consent is the building block of good medicine and fair democracy. Without it, our officials are just dictators,” Underwood said.
Editor’s Note: The published article incorrectly cited Representative Weaver with the above quote when it came instead from Alabama Outreach Collaborative’s Outreach Director Helen Underwood. We deeply regret this error.