Would you share your DNA info to advance medicine?

Kansas City StarApril 25, 2014 

The provocative question of how “big data” will affect medicine and patient privacy is getting a lot of attention at the National Institutes of Health.

Everyone recognizes the potential. Physicians are mining DNA data to assess how a certain drug might affect a particular patient. Data banks of genomic information are the entry into the brave new world of personalized medicine, and the bigger the better.

That raises questions of privacy and responsibility. Does a patient’s genomic makeup belong to the individual, or to the greater cause?

“That’s something we think deeply about and have a host of potential solutions,” NIH Director Francis Collins said last week.

The NIH, which funds medical research in the United States, recently started a project called “big data to knowledge,” or BD2K. Its purpose is to expand analytical techniques and software, further the training of data scientists and encourage the broad use and sharing of biomedical data sets.

Collins, former head of the Human Genome Project, succinctly articulated his thoughts on the ethics of patient data during a brief conversation with journalists.

“Your DNA sequence is really private information and it shouldn’t be given out to other third parties without your permission,” he said. “I think basically our position is, if the DNA sequence is going to be used for research, you should be asked about whether that’s OK and it would be nice if that was given to you in some sort of tiered opportunity to say yes.”

In other words, patients should have options, Collins said. Should their DNA information be used in all aspects of medical research, or just for research on a particular disease, or even a more limited use?

“Respect for persons means you should ask,” Collins said.

Of course you should, and I don’t think Americans would have it any other way. People don’t want their DNA floating around a massive medical data bank without their permission any more than they want their phone and text information to be part of an NSA databank.

But I think some persuasion is in order, too.

Collins spoke to the great potential of big data in medicine: “Your doctor can look at your genomic information and know if that drug is the right drug for you. Or should you have a different one or a different dose? That can be very powerful.”

But what makes genomic information powerful is a broad basis for comparison. How is your DNA sequencing similar to or different from another patient’s for whom a treatment worked or failed? The size of the database matters.

For that reason I hope the medical profession leans toward persuading patients to be generous with their information, while at the same time taking measures to protect the data from misuse.

Barbara Shelly is a columnist for the Kansas City Star. Email her at bshelly@kcstar.com.

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