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Apr. 9th, 2002 11:54 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
rivkaLast week, briefly, I attended the Society of Behavioral Medicine's annual meeting. It's usually my favorite conference, but this year I found myself feeling very focused about it: I wanted to get in, present my research ("Predicting and Preventing Nonadherence in an Inner City HIV Clinic"), and get back to immersing myself in data collection and the thousand-and-one other things on my list. I stayed for the rest of the day after my 8:30 presentation, though, which turned out to be a good idea.
The keynote speaker on Thursday was the head of the National Human Genome Research Institute, which is the public (as opposed to the corporate) research institute devoted to sequencing human and animal genomes. I was deeply suspicious. What was this guy doing coming to lecture an organization that had the word behavioral right in the title? I half-feared a lecture arguing that behavior is genetically determined - although surely the conference sponsors knew better than that.
He began the talk with colorful gee-whiz genetic research anecdotes, nicely dosed with humility: for example, the recent discovery that the human genome is smaller than the genome of rice. He had some interesting examples of the uses to which genomic research could be put - there's a particular drug (I think for blood pressure) that works well for people who have two particular genes, less well for people with just one of those two genes, and not at all for people without either gene. He demonstrated a good understanding of the fact that nearly every health outcome is multiply determined - involving a complex combination of genetic and environmental factors - and he seemed to realize that just because the genetic side was what he knew best, that didn't make it more important. (Unfortunately, that's not as obvious a point as it should be.)
But his fundamental message was this: we currently have the potential to give people a lot of information about the potentialities of their genetic code, and our ability to do so will increase dramatically over the next few years. What are they going to do with that information? Can they use it? Most of it will be available only in terms of probabilities, dispositions, tendencies. How well will people integrate that kind of fuzzy data into the decisions they make about their health, about their reproductive choices, about their options? We don't have that much data about how people use genetic information - and what we do have involves single issues, or single genes. What happens when there are thousands of known genes, each with an identified effect on health parameters?
The Genome Project doesn't know, but they do recognize that they need to find out fast. They're calling for research proposals.
I'm particularly interested in how my clinic population will - or won't - be able to make use of information like this. I work with a lot of people who are illiterate or barely literate, who have eighth grade educations from shoddy inner-city public schools, who don't understand the basic parameters of diseases they already have. They're disproportionately represented in the health care system (the poor are always sicker), especially the publicly-funded health care system. They're going to be targets for some of these tests - if nothing else, in an effort to reduce their burden on the health care system. I'm curious to know how that will play out - whether they'll want the information, whether they'll be able to make use of it, whether there's anything that can be done to provide specific education or supports to assist them in their decision making.
Do I want to suggest that we submit a research proposal? Hmm...
The keynote speaker on Thursday was the head of the National Human Genome Research Institute, which is the public (as opposed to the corporate) research institute devoted to sequencing human and animal genomes. I was deeply suspicious. What was this guy doing coming to lecture an organization that had the word behavioral right in the title? I half-feared a lecture arguing that behavior is genetically determined - although surely the conference sponsors knew better than that.
He began the talk with colorful gee-whiz genetic research anecdotes, nicely dosed with humility: for example, the recent discovery that the human genome is smaller than the genome of rice. He had some interesting examples of the uses to which genomic research could be put - there's a particular drug (I think for blood pressure) that works well for people who have two particular genes, less well for people with just one of those two genes, and not at all for people without either gene. He demonstrated a good understanding of the fact that nearly every health outcome is multiply determined - involving a complex combination of genetic and environmental factors - and he seemed to realize that just because the genetic side was what he knew best, that didn't make it more important. (Unfortunately, that's not as obvious a point as it should be.)
But his fundamental message was this: we currently have the potential to give people a lot of information about the potentialities of their genetic code, and our ability to do so will increase dramatically over the next few years. What are they going to do with that information? Can they use it? Most of it will be available only in terms of probabilities, dispositions, tendencies. How well will people integrate that kind of fuzzy data into the decisions they make about their health, about their reproductive choices, about their options? We don't have that much data about how people use genetic information - and what we do have involves single issues, or single genes. What happens when there are thousands of known genes, each with an identified effect on health parameters?
The Genome Project doesn't know, but they do recognize that they need to find out fast. They're calling for research proposals.
I'm particularly interested in how my clinic population will - or won't - be able to make use of information like this. I work with a lot of people who are illiterate or barely literate, who have eighth grade educations from shoddy inner-city public schools, who don't understand the basic parameters of diseases they already have. They're disproportionately represented in the health care system (the poor are always sicker), especially the publicly-funded health care system. They're going to be targets for some of these tests - if nothing else, in an effort to reduce their burden on the health care system. I'm curious to know how that will play out - whether they'll want the information, whether they'll be able to make use of it, whether there's anything that can be done to provide specific education or supports to assist them in their decision making.
Do I want to suggest that we submit a research proposal? Hmm...
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Date: 2002-04-09 11:05 am (UTC)I think you should. Definitely.
no subject
Date: 2002-04-09 11:37 am (UTC)odd coincidence
Date: 2002-04-10 06:01 am (UTC)And the last file I put away was one of the ones on Genome Canada - could someone please cue the Twilight Zone music now?
And more seriously - yes, I think a research proposal would be a good idea.