Camping Around Health Insurance Discrimination

One of the most common concerns I hear about personal genome sequencing is the potential impact it could have on an individual’s health insurance. People are worried that if they get their genome sequenced and it indicates they are at increased risk for certain diseases, this knowledge may cause their health insurance premiums to rise or make them uninsurable.

While the opportunity for personal genome sequencing still lies in the future, there is a debate happening now about whether to institute protections for individuals from health insurers based on our current knowledge about genetic testing and the reasonable certainty that widespread adoption of these technologies in the years ahead is inevitable.

The idea that people might forego needed medical care for fear of discrimination by health insurers has motivated some to propose that we pass legislation that prohibits them from using genetic test results for certain purposes. After all, even though genetic testing may be relatively uncommon today, it is clear that as more and more people choose to peer into their genomes, this issue will soon touch us all.

So, if you are at all interested in the possibility of peering into your own genome, its essential that you understand the debates happening today around health insurance. At some point you will need to decide for yourself whether the benefits that might be gained from being sequenced outweigh any personal risks you may incur, including changes to your health insurance. Between now and then, there are opportunities to influence the debate, and ultimately, the choices that you’ll be able to make.

People who offer solutions to the genetics and health insurance issue, tend to fall into three camps:

  1. the patient advocates
  2. the free-market purists
  3. the ignotarians

I’ll take each in turn below the jump.
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Best Hegel Reference Heard Today, errr ever

as Hegel said… Kant’s requirement to become acquainted with the instrument, in this case the Mind, before one starts to use it, is like a resolution not to venture into water until one has learned to swim

The insight here is that its impossible to learn to swim without first getting wet.  A reference to this critique of Kant by Hegel was casually slipped into a discussion I had today with a friend about different approaches to introducing new technologies into society. (The quote above came this blog, who also cites the original passage.)

Public Supports Using Genetic Data for Most Purposes

A recent Wall Street Journal Online/Harris Interactive poll of 3091 U.S. adults shows widespread support for using genetic data for many purposes, such as research, medicine, and fighting crime.

Attitudes were very clearly pointing in the other direction for health/life insurance and employment purposes. Hands off insurers and employers, the U.S. public doesn’t want you to have their data! Another indication that for adoption of personal health records to succeed in the U.S., they’ll need to come from outside the system.

Poll results below the jump.

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Redirects for the rest of us

I recently migrated my blog from typepad to wordpress, following these directions and employing the help of a friend. This post is for others who make the switch (worth it!) and are looking for a solution to the “trailing .html” permalink redirect issues.

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Welcome Genome Technology Readers

If you’re arriving from Genome Technology Online, welcome! If you don’t know what I’m talking about, you should visit the Genome Technology Online page and consider signing up for daily updates.

My day wouldn’t be complete without reading their daily collection of links. Seriously, I’m not just saying this (and they definitely aren’t paying me). In fact, their links are so reliably good, I would love to know how they filter the information flow with such success. Hey GTO, if it is not top-secret you should tell us how. I’ll show you mine if you show me yours.

You can sign-up for my updates by clicking on the orange button over on the far right column, or put your email address in box just above to receive updates in your inbox as they occur.

Genomics Theme Music

I put the song over in the far right column for easy access. I ultimately hope to have a whole playlist with rotating songs inspired by DNA in some way, although they’ll need to be written and performed by musicians hip enough to provide lenient licenses, like Jonathan Coultan did with “That Spells DNA.” Thanks John!

In all seriousness, with the blog redesign mostly complete I’m inches away from producing actual content worthy of consumption. There still are some kinks to work out with the transfer from typepad to wordpress, but the effort was totally worth it. Wordpress rocks.

Juan Enriquez on Genomics

TED continues to post videos of talks from past conferences. They recently posted Juan Enriquez’s presentation from 2004 entitled “Decoding the Future with Genomics.” Here it is:

 

Juan also wrote the popular “As the Future Catches You“. The book and the TED talk draw upon a lot of the same content. They also draw upon his evocative style. A snapshot of a page from his book shows how he uses design to help express a message:

typography

Here is the same sentence without the creative typography:

  If someone spent her entire life reading a copy of one person’s genome . . . she would barely finish . . . much less understand . . . or remember . . . what she read  

Less effective with plain old text or just less interesting?

Be sure to check out some of the other TED talks. My favorite talks so far are those by Hans Rosling (data never looked so good) and Malcolm Gladwell, a great storyteller. Who knew tomato sauce had such meaning to reveal about human preference? There is no one perfect tomato sauce, there are only perfect tomato sauces…

Pardon the dust during the makeover

Long overdue site overhaul is currently in overdrive now that personal genomics has obtained a relevance that is over and above my original expectations.  Overall I think you’ll be overjoyed by the changes.  I’ll be turning over a new blogging leaf very soon.  Over and out, for the moment.