Health Freedom Watch
CCHC Urges President Bush to Veto Newborn Genetic Screening Bill (S. 1858)
Says Bill Lacks Privacy, Property Rights and Informed Consent Safeguards
Citizens’ Council on Health Care (CCHC) reported that on April 8, the U.S. House of Representatives passed a bill (by voice vote) that authorizes newborn genetic screening and research without privacy and parental consent safeguards. S. 1858 was passed by the U.S. Senate last December, and now has been sent to the President for signing, according to CCHC.
Twila Brase, president of CCHC, stressed that the bill is unethical, immoral, and unconstitutional because it strips citizens of genetic privacy and DNA property rights. She also stated the bill violates research ethics and the Nuremberg Code, because it lacks informed consent. Brase is concerned that if the bill passes, the DNA of all citizens could be accessible to genomic biobanks and would be considered government property for public health researchers.
Not only does the bill lack privacy protections, property rights, and informed consent safeguards, it also lacks an opt-out provision. In order for states to qualify for the federal funds, S. 1858 says that state newborn genetic screening programs “shall include the screening of each newborn for the heritable disorders recommended by the Advisory Committee and adopted by the Secretary [of HHS].” (Emphasis added.) Additionally, the bill would provide for “…recommendations that include the heritable disorders that have the potential to significantly impact public health for which all newborns should be screened, including secondary conditions that may be identified as a result of the laboratory methods used for screening…” (Emphasis added.)
“The DNA taken at birth from every citizen is essentially owned by the government, and every citizen becomes a potential subject of government-sponsored genetic research” Brase stressed. “S. 1858 imposes a federal agenda of DNA databanking and population-wide genetic research. It does not require consent and there are no requirements to fully inform parents about the warehousing of their child’s DNA for the purpose of genetic research. Already, in Minnesota, the state health department reports that 42,210 children of the 780,000 whose DNA is housed in the Minnesota ‘DNA warehouse’ have been subjected to genetic research without their parent’s knowledge or consent,” stressed Brase.
“President Bush should not sign this bill,” Brase said.
Twila Brase is president of Citizens’ Council on Health Care in St. Paul, Minnesota (www.cchconline.org). She can be reached at 651-646-8935.
- “National ‘DNA Warehouse’ Bill Passes; American Citizens to Become Unwilling Subjects of Genetic Research; CCHC Calls on President Bush to Veto the Bill; April 9, 2008: http://www.cchconline.org/pr/pr040908.php
- S. 1858, “Newborn Screening Saves Lives Act of 2007.” To read the complete bill, visit the congressional legislative database http://thomas.loc.gov) and search for bill number S. 1858.
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Privacy-Conscious Congressman’s Health Data on Stolen Laptop
“If there’s one person whose medical records you wouldn’t want to lose track of, it’s the co-chairman of the congressional caucus that focuses on protecting consumers’ privacy,” reported the Associated Press (AP). “But that’s whose medical records went missing. Rep. Joe Barton was one of 3,000 patients whose records may have been breached when a National Institutes of Health laptop was stolen in late February from the trunk of a vehicle.”
On April 3 Rep. Barton and a GOP colleague sent a letter to the Office of Inspector General of the Department of Health and Human Services requesting an investigation of the theft, the Dallas Morning News reported. “According to the Washington Post, the theft potentially exposes seven years’ worth of data, including names, medical diagnoses and details of the patients’ heart scans,” the letter stated. “The information was not encrypted, in violation of federal data security policy. The Washington Post also reported that the NIH made no public comment about the theft and did not send letters notifying the affected patients until March 20—almost a month after the theft occurred.”
The letter continued, “We understand that the NIH is currently recruiting volunteers for more than 5,000 studies. In the interest of protecting the NIH’s ability to recruit future participants for clinical trials, we believe there should be an examination—independent of any NIH internal review—of the circumstances surrounding the February 2008 theft….”
The AP also reported that “[Rep.] Barton said he’s already sensitive to privacy concerns, and that this incident will make him more aggressive in pushing legislation to increase privacy protections. ‘Maybe it’s a sign from heaven that the time for this type of legislation has arrived,’ Barton said.”
Concerned citizens should inform Rep. Barton of their privacy concerns and provide constructive solutions to ensuring true patient privacy, including the important issue of consent. Unless the legal right to withhold consent to disclosure of personal medical information is protected, people won’t really be in control of their health care.
The Honorable Joe Barton
U.S. House of Representatives
2109 Rayburn Building
Washington, DC 20515
(202) 225-3052 fax
Online communication: (http://joebarton.house.gov/ContactJoe.aspx?Type=Contact).
- “Lawmaker’s Health Data on Stolen Laptop,” by Kevin Freking, Associated Press, April 3, 2008.
- “Barton Health Records Stolen and He’s Ticked,” by Todd J. Gillman, Dallas Morning News blog, April 3, 2008.
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Medicare Faces Inadequate Financing
Spending Grew 44 Percent in Past 3 Years
Medicare—the world’s most expensive single-payer health-care program—is not adequately financed for the next ten years, according to the Medicare Trustees’ 43rd report to Congress, released March 25.
The report notes that Medicare’s hospital (Part A) expenditures, which were $203.1 billion in 2007, are projected to more than double to $414.9 billion by 2017. But hospital trust-fund assets are projected to fall from $326 billion this year to $96 billion in 2017.
Total Medicare expenditures are expected to grow to more than $867 billion annually by 2017. “In the long range, projected expenditures and scheduled tax income are substantially out of balance, and the trust fund does not meet our test of long-range close actuarial balance,” the report emphasized.
Total Medicare expenditures amounted to $431.5 billion in 2007 (up from $301.5 billion in 2004). In addition to Part A’s $203.1 billion, last year’s Medicare expenditures included:
- $178.9 billion for Medicare Part B (physician visits, outpatient hospital, home health and other services) and
- $49.5 billion for Medicare Part D (prescription-drug coverage and premium and cost-sharing subsidies for low-income enrollees).
Medicare enrollment grew to 44.1 million people in 2007—36.9 million seniors and 7.2 million disabled—up from 41.9 million in 2004. That is a 5.24 percent increase over three years, while total expenditures grew by 44 percent. (Note: Table II.B1 states that total Medicare expenditures were $431.5 billion in 2007; Table V.F4 states that total Medicare expenditures were $434.7 billion in 2007.)
Source: “2008 Annual Report of the Boards of Trustees of the Federal Hospital Insurance and Federal Supplementary Medical Insurance Trust Funds,” March 25, 2008.
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National Health-Care Systems Around the World
The following is the abstract of The Grass Is Not Always Greener: A Look at National Health-Care Systems Around the World, a new 48-page Cato Policy Analysis (No. 613) by Michael D. Tanner:
Critics of the U.S. health care system frequently point to other countries as models for reform. They point out that many countries spend far less on health care than the United States yet seem to enjoy better health outcomes. The United States should follow the lead of those countries, the critics say, and adopt a government- run, national health care system.
However, a closer look shows that nearly all health care systems worldwide are wrestling with problems of rising costs and lack of access to care. There is no single international model for national health care, of course. Countries vary dramatically in the degree of central control, regulation, and cost sharing they impose, and in the role of private insurance. Still, overall trends from national health care systems around the world suggest the following:
- Health insurance does not mean universal access to health care. In practice, many countries promise universal coverage but ration care or have long waiting lists for treatment.
- Rising health care costs are not a uniquely American phenomenon. Although other countries spend considerably less than the United States on health care, both as a percentage of GDP and per capita, costs are rising almost everywhere, leading to budget deficits, tax increases, and benefit reductions.
- In countries weighted heavily toward government control, people are most likely to face waiting lists, rationing, restrictions on physician choice, and other obstacles to care.
- Countries with more effective national health care systems are successful to the degree that they incorporate market mechanisms such as competition, cost sharing, market prices, and consumer choice, and eschew centralized government control.
Although no country with a national health care system is contemplating abandoning universal coverage, the broad and growing trend is to move away from centralized government control and to introduce more market-oriented features.
The answer then to America’s health care problems lies not in heading down the road to national health care but in learning from the experiences of other countries, which demonstrate the failure of centralized command and control and the benefits of increasing consumer incentives and choice.
Michael Tanner is director of health and welfare studies at the Cato Institute and coauthor of Healthy Competition: What’s Holding Back Health Care and How to Free It (second edition, 2007).
- “The Grass Is Not Always Greener: A Look at National Health Care Systems Around the World,” (Policy Analysis no. 613), by Michael D. Tanner, Cato Institute, March 18, 2008.
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Health Freedom Watch is published by the Insitute for Health Freedom. Editor: Sue Blevins; Assistant Editor: Deborah Grady. Copyright 2008 Institute for Health Freedom.