Genome Sequencing: Who Gets to Use the Data?

Imagine having a child and knowing at birth what diseases he or she will face in life.

Its an ethical conundrum for parents: would you even want to know? This knowledge sounds almost too futuristic, and in many ways it is. But experts say genome sequencing technology is rapidly advancing and becoming less expensive, and it could shape the way we approach preventative care and the insurance industry.

Today, parents can receive newborn screens that check for diseases that need to be treated in infancy as well as genetic testing during early pregnancy that identify possible abnormalities.

The current cost of a complete genome sequencing using blood and saliva comes with a price tag of about $1,000, according to Jeffrey Kahn, deputy director for policy and administration at the Johns Hopkins Berman Institute of Bioethics.

It takes a few hours to produce now. As that gets faster and cheaper, it becomes something that is on a scale where it is almost worthwhile to do for everyone, Kahn says. It would be a big change, moving from that newborn screen to doing full genome sequencing on every child that is born.

But having access to a childs sequence today doesnt mean much. In fact, Kahn likens it to having all of the telephone numbers in the white pages without the names. The sequence would have to be run through software that could pick out certain gene mutations to determine predispositions.

The question then is: who should access this data, and for what purposes? he says.

Interpretation

In 2013, the Food and Drug Administration warned Google-backed (NASDAQ: GOOG) 23andMe to stop selling its $99 genetic tests sold at retailers because it had not received regulatory clearance. The FDA says products that are designed to diagnose or prevent disease are technically medical devices and need regulatory approval.

Misha Angrist, assistant professor at the Duke Institute for Genome Sciences & Policy, says the biggest bottleneck within the industry is interpretation.

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Genome Sequencing: Who Gets to Use the Data?