Comments on: How will we handle the rapidly approaching flood of genomic information on individual patients and consumers? http://www.genomicslawreport.com/index.php/2009/10/05/how-will-we-handle-the-rapidly-approaching-flood-of-genomic-information-on-individual-patients-and-consumers/ News and analysis from the intersection of genomics, personalized medicine and the law Tue, 07 Feb 2012 00:02:31 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: The Spittoon » “What ELSI is new?” at Genomics Law Report http://www.genomicslawreport.com/index.php/2009/10/05/how-will-we-handle-the-rapidly-approaching-flood-of-genomic-information-on-individual-patients-and-consumers/comment-page-1/#comment-724 The Spittoon » “What ELSI is new?” at Genomics Law Report Tue, 06 Oct 2009 00:08:06 +0000 http://www.genomicslawreport.com/?p=1205#comment-724 [...] [...] [...] [...]

]]> By: Andro Hsu http://www.genomicslawreport.com/index.php/2009/10/05/how-will-we-handle-the-rapidly-approaching-flood-of-genomic-information-on-individual-patients-and-consumers/comment-page-1/#comment-723 Andro Hsu Mon, 05 Oct 2009 16:56:30 +0000 http://www.genomicslawreport.com/?p=1205#comment-723 Great points; I appreciate that you recognized that there is a resource limitation not only in the number of trained genetics professionals, but in the ability of any single person to keep abreast of the hundreds of genetic associations being published on a weekly basis, much less the algorithms that will increasingly be required to integrate and interpret them. Discussions must take into account this resource limitation when considering the restriction of access to personal genetic information: should professional consultation be required for an individual to obtain their genetic information for health-related reasons, even if lack of availability might equate to a severe limitation on access? How about for ancestry (though even ancestry-related genetic information can have health consequences)? Of course, you know where 23andMe stands on these questions. :) I would also like to point out that genetic information does not need to be frightening to be useful. You mentioned pharmacogenomic associations--genetic associations that can affect the efficacy, safety, or toxicity of a drug and thus can have effects on the treatment of disease (and some of which are available on genome-wide SNP arrays). Francis Collins said in his recent NEJM interview (http://content.nejm.org/cgi/content/full/361/14/1321) that pharmacogenomic information is most useful when a person already has access to the information before it is needed (i.e. at the time a drug is prescribed). Perhaps it may take the advocacy of individuals who have received their pharmacogenomic data and would like to use it to convince health care professionals of the utility of this information (provided that it is accurate and valid, of course). There's also the question of reimbursement for tests purely for screening/predictive purposes. A representative from Palmetto Government Benefits Administrators made very clear at DXcon09west that Medicare would not reimburse tests that are not being used in the active treatment of disease, such as pharmacogenomic tests--does that mean that you'd have to pay out of pocket to have your pharmacogenomic data in advance of being prescribed a drug? Will this be a further barrier to adoption? Great points; I appreciate that you recognized that there is a resource limitation not only in the number of trained genetics professionals, but in the ability of any single person to keep abreast of the hundreds of genetic associations being published on a weekly basis, much less the algorithms that will increasingly be required to integrate and interpret them. Discussions must take into account this resource limitation when considering the restriction of access to personal genetic information: should professional consultation be required for an individual to obtain their genetic information for health-related reasons, even if lack of availability might equate to a severe limitation on access? How about for ancestry (though even ancestry-related genetic information can have health consequences)? Of course, you know where 23andMe stands on these questions. :)

I would also like to point out that genetic information does not need to be frightening to be useful. You mentioned pharmacogenomic associations–genetic associations that can affect the efficacy, safety, or toxicity of a drug and thus can have effects on the treatment of disease (and some of which are available on genome-wide SNP arrays). Francis Collins said in his recent NEJM interview (http://content.nejm.org/cgi/content/full/361/14/1321) that pharmacogenomic information is most useful when a person already has access to the information before it is needed (i.e. at the time a drug is prescribed). Perhaps it may take the advocacy of individuals who have received their pharmacogenomic data and would like to use it to convince health care professionals of the utility of this information (provided that it is accurate and valid, of course).

There’s also the question of reimbursement for tests purely for screening/predictive purposes. A representative from Palmetto Government Benefits Administrators made very clear at DXcon09west that Medicare would not reimburse tests that are not being used in the active treatment of disease, such as pharmacogenomic tests–does that mean that you’d have to pay out of pocket to have your pharmacogenomic data in advance of being prescribed a drug? Will this be a further barrier to adoption?

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