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Curing cancer requires easier access to genetic data

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(Bloomberg View) — Vice President Joe Biden’s yearlong push to cure cancer by marshaling the resources of the federal government will no doubt involve every kind of cancer study and devote much effort to bringing new investment — public and private — to the work. In one critical corner of cancer research, however, a lot of progress could be made with little new spending, if Biden would help clear a few obstacles.

This is the effort to learn more about which of the so-called variant genes in human DNA cause cancers to start growing. Knowing this, medical scientists could better tell who is at risk and how to prevent and treat the disease. Today, researchers know only a fraction of those variant genes because they lack access to crucial genetic data. Biden could help them get the information they need.

Oncologists typically gather data from just a small share of their patients, and usually only about the tumors themselves, which in turn offer only a small share of the genetic information scientists could use. By sequencing more of the genetic code (or even the entire genome) of more people with cancer, doctors could get a clearer view of the variant genes involved.

Insurance companies, which typically only cover the genetic sequencing of tumors, would have to pay for gathering this additional data. But if Medicare paid for more genetic testing, private insurers would undoubtedly follow.

The next challenge is to make it easier for researchers to gather that data. The main hurdle here is a 2002 federal rule, based on the Health Insurance Portability and Accountability Act (HIPAA), that prevents patients’ medical data being released without their consent, or unless certain conditions are met. The idea was and is to protect patients’ privacy.

See also: Privacy Regs Continue To Evolve and Groups Say Health Privacy Still Messy

An update to the HIPAA privacy rule could make it clear that hospitals and doctors’ offices are legally able to share patients’ genetic data with researchers.

Patient privacy would still be a concern, of course, so expanding access to the genetic data would need to be paired with steps to better shield people from having that data used against them. Stricter penalties for data breaches would help, though no system is airtight. And the categories of prohibited genetic discrimination would have to be expanded.

The Genetic Information Non-Discrimination Act of 2008 (GINA) prevents health insurers and employers from discriminating against people based on genetic information.

See also: Bush Signs Genetic Testing Bill

Insurers writing policies to cover life, disability and long-term care should face the same restriction, because in these areas the risk of unequal treatment through no fault of one’s own is just as great.

Another barrier to getting cancer researchers the data they need is logistical: Electronic health records are often incompatible. That means that even when doctors or researchers want to share information, they can’t easily send it along; these data sets can be massive and thus difficult to dispatch via fax or e-mail. Congress could help here by setting higher standards of interoperability for health-data software.

Since Biden’s “moonshot” was announced, many have correctly pointed out that a cure to cancer is unlikely this year. But the vice president can bring medical science a big step closer to the goal.

—Editors: Christopher Flavelle, Mary Duenwald

See also:

HHS, genetic information and LTCI

HHS explains how to hide care from health plans


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