Map of life expectancy at birth from Global Education Project.

Wednesday, May 31, 2006

I think I'm getting too wonky for my own good

This blogging is a difficult form. You have to be topical, timely, and very succinct. It gives me some appreciation for the challenges faced by traditional media trying to stuff complex issues into their procrustean news holes. Anyhow I think I need to gloss the previous post, which is at once very dense, and somewhat elliptical.

They are talking about a Big Science project, like the project to sequence the entire human genome, which was officially completed in 2003 at a cost of about $3 billion -- although with considerable loose ends -- or the Superconducting Supercollider, which was cancelled in 1993 after $2 billion had been spent.

The Human Genome Project came with a set-aside of a little less than 5% (calculations are complicated, check the link if you really care) for studies of what they called "Ethical, Legal and Social Issues" (or implications) (ELSI) of the project, or more accurately I would say, of humanity gaining the associated knowledge. It turns out, in my personal analysis, that the ELSI of just having a map of the human genome are fairly minor, because by itself, it doesn't tell us much of anything. And indeed, the payoff for biomedical knowledge of having the sequence has been slow in coming.

And this, really, is where the new proposed project comes in. It turns out that converting the data created by the HGP into information which is actually meaningful or useful requires another step, just as large. How do genetic variations actually translate into differences in health and well-being, in the specific context of the physical, economic, and social environment? And of course, other environments have existed, do exist, and might exist, besides the ones in which Americans alive today were conceived, gestated, grew up and live out their lives; and each of us has our own environmental history which is in part unique. So when we do find associations between genes and diseases, is the problem really in our genes, or is it in a society which favors some genes and disfavors others? (Is it in our stars or in ourselves, that we are underlings?) So knowing the genome is like learning the alphabet. That's kindergarten. Now we need to learn how to read. And just as kindergarteners are pretty much amoral, we can't really struggle with the ELSI until we are old enough to read. That's what my previous post was starting to get at.

The ELSI web site is here. The project classifies them as:

  1. Fairness in the use of genetic information by insurers, employers, courts, schools, adoption agencies, and the military, among others.
  2. Privacy and confidentiality of genetic information.
  3. Psychological impact and stigmatization due to an individual's genetic differences.
  4. Reproductive issues including adequate informed consent for complex and potentially controversial procedures, use of genetic information in reproductive decision making, and reproductive rights.
  5. Clinical issues including the education of doctors and other health service providers, patients, and the general public in genetic capabilities, scientific limitations, and social risks; and implementation of standards and quality-control measures in testing procedures.
  6. Uncertainties associated with gene tests for susceptibilities and complex conditions (e.g., heart disease) linked to multiple genes and gene-environment interactions. [Note: This is naively stated. Said uncertainties are ubiquitous; nearly all genetic predispositions are linked to multiple genes and gene-environment interactions. This is what I mean by the pervasively reductionist thinking associated with this entire field. -- C]
  7. Conceptual and philosophical implications regarding human responsibility, free will vs genetic determinism, and concepts of health and disease.
  8. Health and environmental issues concerning genetically modified foods (GM) and microbes.
  9. Commercialization of products including property rights (patents, copyrights, and trade secrets) and accessibility of data and materials.
So, I hope this helps people think about the previous post and begin to see why there are important issues at stake. Tomorrow I'll get back to the psychiatric diseases.

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