susanne haga

disclosure of research results to participants of genome research studies

hmm...i guess the most interesting thing i got from this seminar is that it is a therapeutic misconception that that researcher-participant relationship is not the same as a doctor-patient relationship. whether or not they should be is not something that was really addressed.\

anyway, i talked to ruth ann about it afterward. i guess while we usually take into consideration questions like would you want to know if you are predisposed to develop such untreatable diseases such as alzheimer's, she brought up...would you want to know that you are predisposed to high cholesterol? hmmm, so i think rather than this being an ignorance is bliss thing, it's more along the lines of living your life responsibly (e.g. not kicking the bucket pre-emptively).

another thing that was brought up was if there is to be universal disclosure, there will certainly be patent infringement. i don't really know how gene patents work, but the guy sitting next to me said that patent holders should settle quickly if the work is not-for-profit. right right.

ooh strategic recruitment for haga's studies meant she advertised in churches because "churches are some of the most segregated institutions". so, i think it's true. but a shame that that's the kind of the witness that some people are getting from churches. mmm racial reconciliation, i think i might leave it to edith to think about... :)

other interesting thing to note, i ran into the woman that i met at chelsea clinton's talk a month or two ago who went on and on about the plight of women (but in an interesting way). i ran over to say hi, she told me her name, i forgot it. crap. i think she might work in the igsp though. what a mystery! maybe it will be the game of this summer to discover her identity!! :)