Comments on: Kaiser’s Massive Genetic Database Leverages Its Patient Population (But It’s A One Way Street) http://www.genomicslawreport.com/index.php/2009/10/22/kaisers-genetic-database/ News and analysis from the intersection of genomics, personalized medicine and the law Fri, 10 Sep 2010 06:52:16 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: David R Bachinsky http://www.genomicslawreport.com/index.php/2009/10/22/kaisers-genetic-database/comment-page-1/#comment-966 David R Bachinsky Thu, 22 Oct 2009 19:54:09 +0000 http://www.genomicslawreport.com/?p=1540#comment-966 Phenotype data is key for many future studies in human genetics and is not well standardized. This is problematic and will need input from various stakeholders in the human genetics community. Different doctors can not always agree to phenotype and standardization of environmental insults will be challenging. Insurance companies might provide value some day to something beyond themselves-a statement I can not believe is true? This could help their bottom line? This area of phenotype information deserves NIH funding but I would think with profits within the insurance industry that they could provide this valuable information-pay back for years of paying for insurance without using a doctor for decades-for some of us. Your comments about how to deal with SNPs that are medically actionable reminded me of another ethically challenging situation and one with the legal community involved. I taught medical genetics a few years ago and remember that there was a lawsuit from a medical student in NJ (I think) and the basis of the lawsuit was the fact that the plaintiff's father died of colon cancer and she sued the doctor for failing to provide the genetic information about the father to the family so that they could be tested. I am confused about what is the responsibility, if any, for the doctor to tell family members about a DNA mutation that may affect their health. Do doctors now only have to communicate with their patient or are they responsible for communicating to family members? This legal situation happened around 2002 but I do not know the outcome-I suspect the doctor-patient interaction remains private and only between the two? Phenotype data is key for many future studies in human genetics and is not well standardized. This is problematic and will need input from various stakeholders in the human genetics community. Different doctors can not always agree to phenotype and standardization of environmental insults will be challenging. Insurance companies might provide value some day to something beyond themselves-a statement I can not believe is true? This could help their bottom line? This area of phenotype information deserves NIH funding but I would think with profits within the insurance industry that they could provide this valuable information-pay back for years of paying for insurance without using a doctor for decades-for some of us.

Your comments about how to deal with SNPs that are medically actionable reminded me of another ethically challenging situation and one with the legal community involved. I taught medical genetics a few years ago and remember that there was a lawsuit from a medical student in NJ (I think) and the basis of the lawsuit was the fact that the plaintiff’s father died of colon cancer and she sued the doctor for failing to provide the genetic information about the father to the family so that they could be tested. I am confused about what is the responsibility, if any, for the doctor to tell family members about a DNA mutation that may affect their health. Do doctors now only have to communicate with their patient or are they responsible for communicating to family members? This legal situation happened around 2002 but I do not know the outcome-I suspect the doctor-patient interaction remains private and only between the two?

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