J. Craig Venter plans to keep the genomic data gathered at Human Longevity tight to the chest.
Much like the White House’s Precision Medicine Initiative, the genomics luminary has announced plans to sequence one million genomes by 2020. So, in keeping with the current vogue of open-sourcing data, does Venter have any interest in commingling his genomic database with the government’s?
“Unlikely,” Venter said, during a keynote speech at the Mayo Clinic’s Individualizing Medicine Conference in Rochester, Minnesota this week.
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“I think this notion that you can have genome sequences from public databases is extremely naive,” Venter said. “We’re worried there will be future lawsuits from people who were guaranteed anonymity who will clearly not have it.”
This stance will likely inform Venter’s policy on Human Longevity’s new consumer-facing genomics business, which was just announced today. In collaboration with a South African health insurer, Human Longevity will soon offer whole exome sequencing that tells individuals about their most medically relevant genetic information – for just $250.
This public offering could dramatically increase Human Longevity’s access to larger swaths of diverse DNA – helping make that goal of one million sequenced genomes by 2020 a reality.
Venter said that he’ll keep the Human Longevity data private because it’s challenging to deal with the accuracy and quality of data when it comes from from multiple sources. While the genomes studied at Human Longevity are all sequenced with Illumina’s HiSeq X Ten, Venter has his doubts about the machines and methods used to sequence genomes from other organizations.
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“We get the highest quality of data of any center off the Illumina X10 sequencers, and don’t want to commingle it with data from other sources that don’t necessarily have the same degrees of accuracy.
The Human Longevity database will be built on self-generated data, he said, though it’ll likely share information about allele frequencies.
It was interesting to have Venter come straight out and say why Human Longevity is keeping its data proprietary. Venter has skirted the issue in the past, despite participating in White House precision medicine events. Last year, he wrote:
It is encouraging that the US government is discussing taking a role in a genomic-enabled future, especially funding the Food and Drug Administration (FDA) to develop high-quality, curated databases and develop additional genomic expertise. We agree, though, that there are still significant issues that must be addressed in any government-funded and led precision medicine program. Issues surrounding who will have access to the data, privacy and patient medical/genomic records are some of the most pressing.
We look forward to continuing the dialogue with the Administration, FDA and other stakeholders as this is an important initiative in which government must work hand in hand with the commercial sector and academia.
The Mayo Clinic discussion was a much more finite stance on his concerns of privacy in data sharing – and the consistency of data quality. Different scientists and different machines will interpret data from next-generation sequencing in a different manner.
But we’re not looking at a VHS vs. Betamax situation here – it’s unlikely that Human Longevity is competing with the government. This looks more like a matter of efficiency and pushing forward at a pace that’s easier in the private sector than in a bureaucracy.
