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.

Sue A. Blevins is founder and president of the Institute for Health Freedom.

• "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.

National Health Spending to Double by 2015

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."