The head of the Institute for Health Freedom says now is the time for American residents to rise up if they want to keep control over their health records, because the data soon will be for sale and is forecast to become the next “gold rush.”
WND has reported several times on similar issues, including when parents in Minnesota recently sued the state to prevent the collection of their infants’ DNA without permission to use it for research.
Institute President Sue Blevins said the new “stimulus” bill approved by Congress provides for electronic health records for all Americans.
The move, she says, weakens an individual’s control over his or her own health records to the point that data could be employed for research that may end up being used against the patient.
“The economic stimulus law plans for every American to use an electronic health record (EHR) and allows those records to be sold for research and public-health purposes – without patients’ consent,” she explained.
“According to some health IT experts, we’re entering a ‘gold rush’ era for health data,” she continued. “Sophisticated data-management techniques make it increasingly easy to share individuals’ most sensitive health data – including genetic information – without their knowing it.”
The data sharing, she said, will be enhanced by the provisions of the stimulus law.
So Americans need to immediately determine their priorities for patient ownership and consent rights to the ultimate in personal information – medical information, Blevins said.
“Unfortunately, the economic stimulus law does not guarantee that individuals own and control their genetic and other personal health data,” she said. “Thus, Congress should act soon to make sure Americans have individual ownership rights and full control over their personal health data as we move toward adopting EHR systems.”
Blevins said her goal is not to be alarmist. But she says that already within the U.S. there have been episodes of eugenics, the early 20th-century practice in which states involuntarily sterilized people officials deemed unworthy of reproducing.
Even the U.S. Supreme Court endorsed the concept in its 1927 Buck v. Bell ruling which authorized the involuntarily sterilization of a young girl described as “feeble-minded.” The ruling stood until 1974, when the state of Virginia repealed its sterilization procedures.
In the 1927 decision, Justice Oliver Wendell Holmes Jr. noted, “It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes.”
Blevins said the government is simply incapable of keeping up with the fast advances in science and medicine, and private medical information needs to be left in control of the patients themselves, not a bureaucracy.
“Let’s hope Congress fixes this soon by ensuring ownership rights and patient-consent rights regarding the disclosure of Americans’ personal health information – including genetic information,” said Blevins, whose organization works to bring the issues of personal health freedom into a public debate by monitoring and reporting on national policies that impact citizens’ freedom to own their own health care decisions.
She suggested under the new policies being implemented, people will end up with three choices, none of them desirable.
The first is to participate in the health care system and give up control of health information. The second is to lie to your doctor about issues you want private, or simply not get the health care that would be ideal.
Health care information should be confidential, like information shared with members of the clergy or a lawyer, she said.
“This is the perfect opportunity to make sure our laws are really good,” she said.
For example, the federal law requiring “confidentiality” for medical records, in combination with the new stimulus plan, “promotes a health information highway by ‘planning’ for electronic health records without opt-out or patient-consent provisions.
“Moreover, the economic stimulus law fosters non-consensual exchanges by promoting EHRs and allowing them to be exchanged and/or sold for public-health purposes,” she said.
Even psychotherapy records of patients “can be shared with the secretary of health and human services without individuals’ consent (including private-paying patients),” she said.
Blevins’ analysis of the new stimulus plan concludes it does not provide for patients to have final say in whether their personal health information, including genetic information, is shared with hundreds of thousands of health-related organizations.
It also permits electronic records to be sold for research. And while it allows individuals to ask that information not be shared with health plans, patients who choose that option must pay in full for their treatments out of pocket. Even then, the information still can go to researchers.
In the Minnesota case, the concern specifically is over the DNA collected from newborns and available for various research projects.
The Citizens’ Council on Health Care has called attention to that practice.
“None of these activities is authorized in law, and all of them violate the Minnesota genetic privacy law,” said Twila Brase, president of CCHC.
She told WND in an earlier interview there’s nothing substantially alarming about reviewing DNA for various disease possibilities, but her concern lies with the fact “researchers already are looking for genes related to violence, crime and different behaviors.”
“It’s also about behavioral issues,” 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.
In Britain, Chris Davis of the National Primary Headteachers’ Association warned the move could be seen “as a step towards a police state.”
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.
It 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 earlier. “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.