“Controlling your life online isn’t about a set of guidelines for everyone to follow. It’s about being aware of where you might be giving up control and making conscious decisions.”
This is taken from an excellent meditation by Vanessa Fox on living life online (she tagged the post “onlineness” which I had to look at a couple times to find the root word).
One topic she touched on briefly is how a person’s online activity can reach beyond the individual and touch the lives of others. What is acceptable practice in these circumstances? People disagree. Here is a clip:
Video Round-up: Esther Dyson on Charlie Rose, Spencer Wells on Colbert, and important video I can’t show you on genetic discrimination
Esther Dyson was interviewed on the Charlie Rose Show this past week. Charlie Rose ends the show by saying to Esther, “I can’t wait to see your genome”. I think this is the first time I’ve ever witnessed this expression being used like this — said with such endearment too! — but I’m sure it won’t be the last. (A google search for this phrase shows zero results at the time this post was written.)
The first twenty minutes of the show are mostly about Esther’s involvement in the Personal Genome Project (PGP) [disclosure: I work for the PGP]. The discussion doesn’t stop at genomes or health; the rest of the show ventures into the future of commercial space travel, the internet, cookie monsters, personalized search, AI and more. Esther never ceases to inform and inspire me, and challenge the way I think. I’m so glad she is among the folks that will be pioneering personal genomics for the rest of us via the PGP. Check it out:
In David Zindell’s space opera Neverness, the term “slel” is introduced to describe the misappropriation of someone else’s DNA. In a review of Zindell’s book, Orson Scott Card gives us the following definition:
Slel: To take DNA from someone against his will, to create avatars of him, or perhaps children.
Last week Hsien documented the recent efforts of UK police to make slelling a standard practice.
I’ve got two riffs on slelling for you: (1) genetic avatars and (2) DNA bubble gum.
There is this meme that has been going around about how “celebrity genomics” is in some way very naughty and should be avoided. This meme keeps popping up since it was first inaugurated in a news article by Erika Check entitled “Celebrity genomes alarm researchers”. Here were some of the quotes from that article:
Should there be a minimum age requirement for personal genome sequencing? If so, what age?
Or maybe that question is irrelevant — or only relevant for the next decade or two. Future generations might get sequenced at birth (or maybe even prior to birth via PGD). That might leave no individual choice about personal sequencing, in which case, maybe there will be regulations about the minimum age for disclosure of personal genomic data to individuals. 13? 18? 21? 30? What age?
As powerful web technologies are applied to the practice of medicine the relationships between patients, health care providers, and scientific researchers will be reconfigured in new and interesting ways. Watching the early stages of this transformation has made me in recent weeks begin to reflect more on how this reconfiguration is going to impact medical ethics. I’ve come to the tentative conclusion that while we are in the very early stages of “medicine 2.0” we are in an even earlier stage of “medical ethics 2.0” and this may have some unforeseen consequences for early adopters of these new web technologies.
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:
- the patient advocates
- the free-market purists
- the ignotarians
I’ll take each in turn below the jump.
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.)
Here is Representative Louise Slaughter (D-NY) discussing the importance of GINA on the House floor yesterday:
(If you’re reading via RSS, you might need to go to my site to view the embedded video)
Full proceedings from the Congressional Record, April 25, 2007, ~20 pages (PDF)
Not everyone agrees that legally enforced genetic privacy, i.e. GINA (H.R. 493), is a good idea. One of the earliest voices of opposition to genetic privacy was Richard Epstein (dating back to a 1994 paper, see below). At the University of Chicago Law School Faculty Blog, he makes his case against genetic privacy:
The larger point here is that genetic information is in principle no
different from any other kind of information that can be asked about a
given person…Does it really make sense to prohibit the use of genetic information
that might explain why a person has shortness of breath and then allow
the employer to look at medical records that reveal that condition. The
claims of privacy are the same in both cases, and both should be
rejected. Sure, you can keep anything quiet if you don’t want to get a
job, but if you do, then the employer could require the disclosure in
order to allow it to control its costs and to make intelligent
decisions. Do we really want work[er]s with heart conditions to conceal
their risk when a simple reassignment might forestall a catastrophic
If you’re following GINA, Kaiser published a nice summary of the current status of the bill today.
Richard A. Epstein, The Legal Regulation of Genetic Discrimination: Old Responses to New Technology, 74 B.U. L. Rev. 1 (1994)
Genetic Alliance’s policy page on GINA