A little-discussed provision in President Obama’s economic stimulus plan would demand that every American submit to a government program for electronic medical records without a choice to opt out, and it has privacy advocates more than a little alarmed.
Patients might be alarmed, too, privacy advocates said, if they realized information such as documentation on abortions, mental health problems, impotence, being labeled as a non-compliant patient, lawsuits against doctors and sexual problems could be shared electronically with, perhaps, millions of people.
Sue A. Blevins, president of the Institute for Health Freedom, said unless people have the right to decide “if and when” their health information is shared, there is no real privacy.
“President Obama has pledged to advance freedom,” she said. “Therefore the freedom to choose not to participate in a national electronic health-records system must be upheld.”
Blevins’ organization, one of the few raising the alarm at this point, said the stimulus plan would impose an electronic health records system on every person in the U.S. without any provision for seeking patient consent or allowing them not to participate.
“Without those protections, Americans’ electronic health records could be shared – without their consent – with over 600,000 covered entities through the forthcoming nationally linked electronic health-records network,” Blevins said.
The organization said Americans who care about health privacy should contact members of Congress and the president to let them know about the need for opt-out and consent provisions.
According to the institute, the measure currently includes plans for:
- An electronic health record “for each person in the United States by 2014.”
- A national coordinator to develop a “nationwide health information technology infrastructure that allows for the electronic use and exchange of information.”
The institute said the medical privacy rule established under the Health Insurance Portability and Accountability Act of 1996 already allows personal health information to be passed along without patient consent for treatment, payment and “oversight.” The recipients of such information could be any of the people in the 600,000 organizations in the industry.
“Nobody wants to stop the proper use of good technology,” Blevins said, “and for some people privacy is not an issue.”
But she said the bottom line is that patients “would end up losing control of his or her personal health information.”
“There’s a lot at stake with electronically transferring health data and paying claims within the $2.2 trillion health-care industry,” warned the organization, which works on issues of health freedom in the U.S.
Another group, Consumer Watchdog, even suggested today Google is trying to lobby for the “sale of electronic medical records.”
The group said, “Reportedly Google is pushing for the provisions so it may sell patient medical information to its advertising clients on the new ‘Google Health’ database.”
Consumer Watchdog said, “Americans will benefit from an integrated system capable of making our medical records available wherever we may need them, but only if the system is properly used.
“The medical technology portion of the economic stimulus bill does not sufficiently protect patient privacy, and recent amendments have made this situation worse. Medical privacy must be strengthened before the measure’s final passage,” the group said.
Gov. Tim Pawlenty has been successful in stopping the action there so far.
The Citizens’ Council on Health Care has worked to publicize the issue in Minnesota. The group raised opposition when the state Department of Health continued to warehouse DNA without parental consent in violation of the genetic privacy and DNA property rights of parents and children.
Brase, president of CCHC, said at the time the problem is that “researchers already are looking for genes related to violence, crime and different behaviors.”
In an extensive interview with WND at the time, she said, “In England they decided they should have doctors looking for problem children, and have those children reported, and their DNA taken in case they would become criminals.”
In fact, published reports in Britain note that senior police forensics experts believe genetic samples should be studied, because it may be possible to identify potential criminals as young as age 5.
Brase said efforts to study traits and gene factors and classify people would be just the beginning. What could happen through subsequent programs to address such conditions, she wondered.
“Not all research is great,” she said.
Classifying of people could lead to “discrimination and prejudice. … People can look at data about you and make assessments ultimately of who you are.”
The Heartland Regional Genetics and Newborn Screening is one of the organizations that advocates more screening and research.
The group proclaims in its vision statement a desire to see newborns screened for 200 conditions. It also forecasts “every student … with an individual program for education based on confidential interpretation of their family medical history, their brain imaging, their genetic predictors of best learning methods. …”
Further, every individual should share information about “personal and family health histories” as well as “gene tests for recessive conditions and drug metabolism” with the “other parent of their future children.”
Still further, it seeks “ecogenetic research that could improve health, lessen disability, and lower costs for sickness.”
“They want to test every child for 200 conditions, take the child’s history and a brain image, and genetics, and come up with a plan for that child,” Brase said at the time. “They want to learn their weaknesses and defects.
“Nobody including and especially the government should be allowed to create such extensive profiles,” she said.
The next step, said Brase, is obvious: The government, with information about potential health weaknesses, could say to couples, “We don’t want your expensive children.”
“I think people have forgotten about eugenics. The fact of the matter is that the eugenicists have not gone away. Newborn genetic testing is the entry into the 21st Century version of eugenics,” she said.