Will We Be Maintaining Our Genomic Health Record?

If you’re interested in Genomic Medicine like I am, be sure to check out my article on EMR and EHR called “When Will Genomic Medicine Become As Common As Antibiotics?” That’s a really interesting question that’s worth considering. We’re not there yet and won’t get there for a couple years. However, I think that genomic medicine will become as common as antibiotics and will have a massive impact on healthcare the way antibiotics have as well.

The article mentioned links to a genomics whitepaper that talks about a person’s genomic health record. I’d never heard the term before, but I’m definitely intrigued by the idea of everyone having their own genomic health record.

We’ve talked forever about people having a personal health record which they need to collect and maintain. Some people store it in a PHR on the web and others store it on a mobile phone. However, we’ve never really seen the personal health record take off. This is true for a number of reasons. The first is that it’s still quite difficult to aggregate your entire health record across multiple providers. I even read of one PHR that was paying doctors to provide them a patient’s record. The second problem is that patients don’t know what to do with all the records once they have them. Even if they go to their doctor and say they have their full patient record, the doctor hands them a stack of health history forms to fill out. Best case, they file a copy of the patients records in the chart (usually in some sort of PDF or paper copy).

Now let’s think about those challenges from the perspective of a genomic health record. If you’ve paid thousands of dollars for genomic tests and analysis, are you going to want to pay that again to the next doctor you see? No, they’re going to ask you for your copy of their genomic record and use that as part of your care. Patients won’t want to pay for another genomic test and it will be easier to get their record, so they’ll be more motivated to get and maintain it than they were with a simple personal health record. It’s pretty compelling to consider.

Some challenges and questions I have about how this will evolve. Will your PHR start to include your genomic health record or will it be something that’s stored separately? Will their be a standard for the genomic health record so that the doctor can easily use that record in the work they’re doing? Will the genomic health record be so large that it will have to be stored in the cloud?

What do you think of the concept of a genomic health record?

About the author

John Lynn

John Lynn

John Lynn is the Founder of the HealthcareScene.com, a network of leading Healthcare IT resources. The flagship blog, Healthcare IT Today, contains over 13,000 articles with over half of the articles written by John. These EMR and Healthcare IT related articles have been viewed over 20 million times.

John manages Healthcare IT Central, the leading career Health IT job board. He also organizes the first of its kind conference and community focused on healthcare marketing, Healthcare and IT Marketing Conference, and a healthcare IT conference, EXPO.health, focused on practical healthcare IT innovation. John is an advisor to multiple healthcare IT companies. John is highly involved in social media, and in addition to his blogs can be found on Twitter: @techguy.


  • Your genomic health record will definitely be of value in the future!

    The human genome has about 3 billion base pairs, which means about 1GB of “codon” storage (with 3 base pairs to a codon stored in a single byte). This is the complete “raw” information, from which all past and future afflictions can (eventually) by ascertained. And as such it is timeless, and pretty much supersedes the current “hard-to-collect” patient information doctors now use for diagnosis.

    The current problem with this data:
    — Cost to attain (especially the full genome vs just genetic “markers”)
    — Evaluation (who knows how to interpret?)
    — Storage (1GB won’t make it on a PHR)

    But eventually costs will come down (as computer processing speed go up). Over time, genomic correlations with specific maladies will increase, making your genomic data increasingly more useful. And thus your current PHR should contain a potential link to your present or future separately-stored genomic record.

    While current analysis is primitive, apps will evolve over time (several decades) to make such analysis more accurate and valuable.

    Of concern in the current insurance risk models, how will this play out when your genomic footprint is so well understood that you are perhaps perceived as “uninsurable”?

  • John,

    You present some interesting considerations. Computing capability is proliferating so we may reach a point where that is not a limiting factor. David, I think you are right that insurability has always been a big concern when we can predict disease. The flip side is that when we can predict disease, we can also jump in early and interrupt the disease process which leads to designer biologics (ie, really expensive drugs that work). Thank you for bringing this topic to our attention, John.


  • I think I already commented on John’s previous article that he references. The promise of genomic medicine is a long long time away and DEFINITELY not going to be there in “couple years”. The amount of money that has been poured into biomarkers and diagnostics is close to a trillion dollars and we don’t have a whole lot to show for yet. The diagnostic tests that have a high absolute risk prediction are far and fee between even today. In fact what exists now is often quite misleading and can be barely understood by docs who are poor at distinguishing between absolute and relative risk ratios.

    I’m not too worried about what insurance companies would or would not be able to do as by the time this actually comes to fruition the health insurance industry as it exists today would be long gone (this in fact will happen over the next 5-10 years).

Click here to post a comment