Junkfood Science: Collecting personal data on you masquerades as a study?

February 16, 2007

Collecting personal data on you masquerades as a study?

According to an Associated Press story, Kaiser Permanent’s latest Research Program on Genes, Environment and Health dwarfs all such projects, but one in the UK:

Kaiser launches study into genes, environmental disease causes

Health-care provider Kaiser Permanente has launched a massive study into the complex interplay of genetics, environment and lifestyles that cause many common diseases.

Kaiser researchers are sending detailed surveys to its 2 million adult members asking about their habits, family medical histories and many other factors that influence health. In a second phase it hopes to start next year, Kaiser will ask members to donate genetic material through cheek swabs or blood draws.

The plan is to combine that information with the company's massive medical history records in a database that researchers can use to gain a deeper understanding of disease causes....

''This program is not just about genes,'' Risch said. ''We also have a clear understanding that nothing in this life is entirely genetic and that environment plays a role in disease.''

Why would an insurance company build an extensive database with every detail about people, their histories and habits?

The conflicts of interest here are stunning. The degree that a patient’s best interests will be protected or that they will have control in how their personal information might be used by a future corporate analyst is impossible to ensure.

The potential for harm is very real. Premiums could be raised based upon a person’s history or family history, their genes or lifestyles; coverage could be denied for something uncovered about a condition that wasn’t noted on an insurance application; or people could be selectively chosen for coverage. These are not groundless concerns as Kaiser Permanente has a history of “Bad Faith Policy Cancellations,” as Attorney Pages recently reported.

One of the most powerful expose’s about insurance company abuses of individual policy holder data was a recent USA Today article by Julie Appleby. Insurance companies comb through records and have denied coverage for things such as the hospital costs for a critically-ill newborn, claiming the mother had written down a different date for her estimated last menstrual period than appeared in her medical records.

People left holding bag when policies revoked

...But each was left with tens of thousands in unpaid medical bills when their insurers — all major companies — retroactively canceled their policies after they faced expensive health problems. "It's the most devastating thing that's ever happened to us," says Seals, 43.

Their stories illustrate a little-recognized fact about insurance purchased by individuals: Even after being approved, policyholders can see their coverage amended to exclude certain medical conditions or revoked entirely, sometimes long after the policies are issued....

But the individual market has hurdles that are not just financial: Insurers in most states can pick and choose whom to cover, often turning down those with medical problems in a process called underwriting. Even if they don't thoroughly check medical records before issuing a policy, insurers can "look back," sometimes for a decade or more, at a policyholder's records to check facts on the application....

This Kaiser study is unlike the databases gathered on people for other epidemiological studies, such as the Harvard Physicians’ Health Study or Nurses Health Study databases. In those and other epidemiological studies, the participants are just a number and their personal identities are unknown to anyone. Not only that, but the keepers of the databases don’t hold any cards over the participants’ insurance coverage, health care or insurance benefits. Kaiser, however, states it is going to tie the data they collect to medical records. It also insures those same individuals and determines what medical care they can receive or it believes they “should” receive, or what lifestyle they must follow to be healthy and in compliance with their policy premiums.

How many of the 2 million members Kaiser hopes to voluntarily send in details of their private life and submit to genetic testing will comply without stopping to question?

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