Health Freedom Watch
Body Snatching? Why We Need Informed
Consent and True Health Privacy Rights
By Sue Blevins
According to psychiatrist and privacy
advocate Deborah Peel, if people believe that they do not have
medical privacy rights, they often lie or avoid sharing critical
information. (One can only imagine how distorted medical data
must be as a result!) She writes, "Who can blame anyone for not trusting the
medical system to keep their secrets and protect them, especially
when they read news articles like this recent one in the Portland Oregonian: 'A group of women who
had difficult childbirths discovered a Portland hospital had
taken their placentas and analyzed them in an off-site lab,
without their knowledge and consent..Under existing federal
privacy laws, this hospital is allowed to analyze any part of
their bodies they wish and not tell them about it first.'"
Additionally, in a recent article
titled "The Body Snatchers," The Week magazine reported: "Two years ago, authorities
uncovered a scheme at UCLA's medical school in which officials
were selling torsos, heads, and limbs for use in unregulated
medical experiments. In Maine, authorities are investigating
claims that human brains from the state's medical examiner's
office were sold to research facilities without family consent."
Given these reports of analyzing personal
health information and procuring body parts without consent,
citizens should be aware of an important fact: the so-called federal medical-privacy rule
(which doesn't really provide absolute health-privacy rights)
does not cover the "procurement or banking of blood,
sperm or body tissue."
In a 2001 paper titled "The Final Federal Medical Privacy Rule: Myths and Facts,"
attorney Robin Kaigh and I pointed out that according to the
federal government's analysis of the rule:
"[T]he procurement or banking of organs,
blood (including autologous blood), sperm, eyes or any other tissue
or human product is not considered
to be health care under this [federal medical-privacy] rule
and the organizations that perform such activities would not be considered health care providers when
conducting these functions." [Emphasis added]
We stress that because blood, sperm
and body tissue includes genetic information, lack of privacy
protections in these areas could have far-reaching effects.
Yet how many ordinary Americans realize they have no guarantee
of privacy in these matters?
Medical ethicist Arthur Caplan told
the Portland Oregonian,
"If you're going to take things from patients-extract DNA or
use them as potential sources in litigation-subjects have an
absolute right to know that and must consent or not."
However, by mislabeling a rule that
doesn't guarantee true privacy or protect patients against nonconsensual
testing or procurement of blood and body tissue, the federal
government is fostering the unethical trends cited above. Let's hope the unethical
practice of procuring and testing human tissue (and other personally
identifiable health information) without consent is abolished
and that true health-privacy
rights are established very soon. And let's refuse to give up
hope of resolving these important national issues, as Americans
deeply cherish the precious ethics of informed consent and confidentiality.
A. Blevins is founder and president of the Institute for Health
- "Ensure Americans' Medical Privacy," by Deborah Peel, Times
Union, February 26, 2006.
- "Up to 700 Women Not Told about Placenta Registry," The
News-Review, February 14, 2006.
- "The Body Snatchers," The Week, February 3, 2006.
- "The Final Federal Medical Privacy Rule: Myths and
Facts," by Sue Blevins and Robin Kaigh, February 8, 2001.
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National Health Spending to Double
Federal actuaries project that national
health spending will grow to more than $4 trillion by 2015,
up from $2 trillion in 2005.
The health spending projections (through 2015) were published
recently in the journal Health
Affairs. The following
trends might be of particular interest to Health Freedom Watch readers:
- Growth in federal and state spending: "[G]rowth in public spending on personal health care
is expected to continue to outpace growth in private spending....[T]he
out-of-pocket share of personal health care spending is projected
to decline from 15.1 percent in 2004 to 12.6 percent by 2015."
- Medicare population to increase, but will become proportionately
younger: "Population aging accounts
for a small but rising share during the next ten years: 0.4
percentage points of growth in 2004 and 0.6 percentage points
in 2015. As the leading edge of the baby-boom generation becomes
eligible for Medicare, the population over age sixty-five becomes
proportionately younger, subtracting from growth in Medicare
per beneficiary spending."
- More seniors in managed care: "In 2004 and 2005, MMA [Medicare Prescription Drug, Improvement,
and Modernization Act of 2003] increased payments to managed
care plans. Beginning in 2006, our projection includes the assumption
of a shift in enrollment from traditional fee-for-service (FFS)
to managed care plans. To be consistent with assumptions in
the Medicare Trustees' report, about 32 percent of Medicare
enrollees are projected to be in managed care plans by 2015,
compared with 12 percent in 2004."
- HSAs encourage price transparency: "HSAs [health savings accounts] and similar types of
consumer-directed health plans continue to grow rapidly, but
from a very small base, accounting for just 1 percent of all
covered employees in 2005. Despite their relatively small scale,
HSAs are beginning to have an effect on health insurance plan
characteristics, with a range of large insurers launching efforts
to provide greater transparency in the pricing of medical services."
The authors conclude that growth in
health spending will outpace growth of the overall economy. They note, "[We] anticipate
that society will again need to confront the underlying questions
about the supply of and demand for health care services, as
we anticipate that one in every five dollars will be devoted
to this sector by 2015."
Source: "Health Spending Projections
Through 2015: Changes On The Horizon," by Christine Borger,
et al., Health Affairs,
February 22, 2006.
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Amish Drive Down Medical Costs
When the Heart of Lancaster Regional
Medical Center opened in Pennsylvania Dutch country in 2004,
the Amish and Mennonites (or Anabaptists) were able to organize
and successfully negotiate lower rates for medical care, says
the Wall Street Journal.
Anabaptists choose to go without insurance
or [participate in any parts of] Medicare as part of their rejection
of the secular world. [The self-employed Amish also reject participation
in Social Security.] Like uninsured patients everywhere, they
are often billed a hospital's full retail price. But unlike
many of the uninsured, they negotiated discounts:
- Collectively, the Anabaptists spend
about $5 million a year in Lancaster County for health services,
all of it in cash; to qualify for discounts, they agreed to
pay 50 percent of the fees upon hospital admission.
- The hospital agreed to discounts of up to 40 percent off
its top rates, resulting in prices still slightly higher than
Medicare reimbursements; the hospital would not drop the prices
any lower for fear it could be charged for fraud for charging
Medicare patients more.
- The Anabaptists pay flat rates such as $16,577 for a hip
replacement-which is about half of the national average cost
in 2004; the rates include the hospital stay and fees for surgery,
anesthesia, medication, testing and occasionally outside specialists.
Anabaptists often go to Mexico for
cut-rate treatment and were able to use prices south of the
border-along with their willingness to pay upfront in cash-as
leverage to bargain for lower prices at home. (Also, the Anabaptists
pledged they would never sue for malpractice.)
- National Center for Policy Analysis (NCPA) summary of Joel
Milliman, "How the Amish Drive Down Medical Costs," Wall
Street Journal, February 21, 2006. (Reprinted with permission
- "The Amish vs. the Feds," by Michelle Malkin, Townhall.com,
December 7, 2000.
- "Valentine Byler vs. the IRS: 'Pay Unto Caesar - The Amish
& Social Security.'"
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Health Freedom Watch is published by the Insitute for Health Freedom. Editor: Sue Blevins; Assistant Editor: Deborah Grady. Copyright 2006 Institute for Health Freedom.