Congress: Protecting Genetic Data Is Worth Doing Right 
COMMENTARY

December 2, 2024by Radoje Drmanac, Founder, Complete Genomics
Congress: Protecting Genetic Data Is Worth Doing Right 
Researchers have created an early map of some of the human body's estimated 37.2 trillion cells. This image provided by Nathan Richoz shows a T cell aggregate in a human trachea biopsy on July 12, 2021, at the University of Cambridge in Cambridge, England. (Nathan Richoz/Clatworthy Lab/University of Cambridge via AP)

The House of Representatives recently passed a bill known as the BIOSECURE Act, which targets individual companies under the guise of protecting personal genetic data. While data security is a good goal in theory, in practice this legislation has been overtaken by a flawed and possibly unconstitutional process driven more by xenophobia and protecting special interests than thoughtful policymaking. 

Now, the Senate can choose to proceed with a companion bill that targets individual companies in a process that will cost American jobs, or take a step back and consider a better, more sound approach. 

Genetic data is some of the most personal data that we have. It represents all the characteristics that make us unique, from hair and eye color to factors that can affect whether we will be diagnosed with cancer, Alzheimer’s or other heartbreaking diseases.

In the past few decades, we have unlocked breakthroughs that tap into and help with understanding this data and what it might mean for disease prevention, diagnosis, treatments and cures.  

I’ve spent my career working to make gene sequencing efficient and accurate and I believe strongly that it is more important than ever to identify clear data security standards for all companies working with this data to meet.

Unfortunately, Congress has chosen to take a different approach and instead has targeted individual companies by name. In doing so, the BIOSECURE Act does nothing to protect the largest pools of DNA data collected by family history companies, leaving large swaths of Americans’ personal data unprotected even as recent reporting suggests 23andMe is currently assessing changes in ownership or structure that could put its greatest assets, the genetic data of millions of Americans, at great peril. 

And now, because of this wrongheaded approach, the company I founded, Complete Genomics, finds itself in the crosshairs based on falsehoods. We are a San Jose, California-based company that manufactures genetic sequencing instruments used to process and analyze genetic data. 

In 2024, we opened a new manufacturing facility at our headquarters to address the supply-chain diversification needs of our customers. The bill’s supporters falsely claim that we are affiliated with a Chinese company called BGI Group, ostensibly the BIOSECURE Act’s main target. But we are no longer part of that company and are instead 100% owned by a company called MGI, which is an independent company publicly traded on the Shanghai Stock Exchange. 

Additionally, we’ve been targeted even though we don’t provide sequencing services and have no access to the genetic data that researchers and labs generate using our products, as our sequencers are not connected to the internet or to any external servers. This was reflected in a report by independent security firm FTI Consulting, which assessed the security of the flagship Complete Genomics sequencer and found no vulnerabilities. Our customers also know that we have no access to their data.

Protecting Americans’ genetic data is a crucial goal but singling out companies that don’t even have access to this data — and therefore cannot and do not share it — while at the same time not including companies that have vast volumes of this data isn’t the way to do it. 

Worse, Congress added us to this bill without giving us any notice or reasonable process to support naming us in the bill. There is also no process identified in the bill that would allow Complete Genomics to be delisted in the future.

Ultimately, this lack of due process stands to decimate our American business by preventing us from selling to many of our current and potential customers. It also violates the Fifth Amendment, which requires due process and compensation for any government taking of property in this manner. 

We wrote to Congress expressing these concerns and are heartened to see some members of Congress agree. In fact, Rep. Jim McGovern, D-Mass., echoed some of these very same concerns recently when the BIOSECURE Act came up for a vote in the House, saying that “this is not what we are supposed to do in the United States. Due process actually matters here. The truth matters here.”

Dozens of his colleagues appeared to agree and voted against the bill. 

Now, it’s time for the Senate to fix the BIOSECURE Act. We fully agree that protecting DNA data is worth doing — but it is worth doing right by setting uniform standards that would apply to all companies with access to this data.

A shoddy approach that takes some of the best equipment away from researchers studying important diseases doesn’t just hurt the companies listed, but also future generations of Americans that could stand to benefit from the cures that could be just around the corner. 

With Congress now in the final weeks of the lame duck session, it is the perfect time to take a step back, reassess and realize that an approach that unfairly and unconstitutionally targets individual companies is not going to suffice for a matter this important.

Scientific breakthroughs — and lives — could be at stake.  


Radoje Drmanac is the founder of Complete Genomics and serves today as its chief science officer. He can be reached on LinkedIn.

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