Human Genomics in the US Government

by Dr. Hsien-Hsien Lei
Posted September 25, 2007 in DNA in General

In the US, research supported by the government and research supported by the private sector often seem to be at odds. For example, the fierce rivalry between the Human Genome Project and Celera back when the human genome was being sequenced is well-documented. At the same time, both sides did end up helping each other in direct and indirect ways.

The Human Genome Project (HGP) explores this relationship in an article about the “working partnership” between the HGP and the private sector:

Substantial public-sector R&D investment often was needed in feasibility demonstrations before such start-up ventures as those by Celera Genomics, Incyte, and Human Genome Sciences could begin. In turn, these companies furnished valuable commercial services that the government could not provide, and the taxes returned by their successes easily repay fundamental public investments.

Alongside the publicity generated from the sequencing of the human genome, other government agencies started complementary projects. The Centers for Disease Control and Prevention (CDC) houses the National Office of Public Health Genomics, which is responsible for “the integration of genomics into public health research, policy, and practice in order to improve the lives and health of all people.” As part of their efforts, the Human Genome Epidemiology Network (HuGENet) was created to promote “global collaboration in developing peer-reviewed information on the relationship between human genomic variation and health and on the quality of genetic tests for screening and prevention.” Some of HuGENet’s current activities include:

• e-Journal Club
• Reviews of specific genetic variants and their associations with disease in the population, genetic tests, etc.
• Fact Sheets that summarize a specific gene
• Case Studies
• Genotype Prevalence Database
• Workshops and Meetings

The US Department of Health and Human Services (HHS) announced the creation of the Personalized Health Care Initiative in March 2007 that will incorporate genomic information.

HHS Secretary Mike Leavitt said in a speech before the annual meetings of the Personalized Medicine Coalition:

Personalized health care will combine the basic scientific breakthroughs of the human genome with computer-age ability to exchange and manage data. Increasingly it will give us the ability to deliver the right treatment to the right patient at the right time — every time.

Every one of us is biologically unique. We’ve always known that, but we haven’t had the knowledge or the tools to deliver health care at that kind of individual level. That’s what’s changing.

The four goals of the Personalized Health Care Initiative are:

• Link clinical and genomic information to support personalized health care
• Protect individuals from discrimination based or unauthorized use of genetic genetic information
• Ensure the accuracy and clinical validity of genetic tests performed for medical application purposes
• Develop common policies for access to genomic databases for federally sponsored programs

In addition, the HHS Personalized Healthcare Initiative aims to:

• Establish a secured electronic system to exchange, aggregate and analyze key data from a large number of existing secure health care databases
• Support the science and health information technology base and enable it to expand
• Support efficient and effective drug development partnerships between public and private sector leadership
• Help integrate the Personalized Health Care into the mainstream of clinical practice.

It’s extremely encouraging to see that the government is aware of the needs and demands of the genome revolution. But, I wonder how much communication there is between the various government organizations and the degree of overlap between goals. Then there is the question of collaboration between the private sector and the government. After all, it’s only natural that everyone will want to protect their turf.

Tags: genetics, genes, dna, genomics, genome, science, hhs, cdc, hugenet

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5 Comments »

Comment by David Bradley

2007-09-25 14:22:15

…and remember any creative works produced by US government employees as part of their work (which could include genes) has no copyright associated with it…

db

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Comment by Hsien-Hsien Lei, PhD

2007-09-26 09:40:41

David, As it should be!

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Comment by Kristina

2007-09-26 03:44:33

And Mr. Leavitt has his own blog, too.

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Comment by Hsien-Hsien Lei, PhD

2007-09-26 09:40:22

How cool is that!! Thanks for the heads-up, Kristina.

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Pingback by Personalized Medicine: The Future is Now « ScienceRoll

2007-09-30 21:30:46

[...] Human Genomics in the US Government (Eye on DNA): It’s extremely encouraging to see that the government is aware of the needs and demands of the genome revolution. But, I wonder how much communication there is between the various government organizations and the degree of overlap between goals. Then there is the question of collaboration between the private sector and the government. [...]

Reply to this comment