The blog of the Presidential Commission for the Study of Bioethical Issues

Do privacy concerns follow the coffee cup?

Is there privacy in everyday items?

As the Presidential Commission for the Study of Bioethical Issues continued its review of genomics and privacy, the group heard from experts on genomic database security, one from the private sector and one from the federal government.

Ken Chahine, Ph.D., is the Senior Vice President of Ancestry.com and General Manager of AncestryDNA, two related companies that take great pains to maintain data confidentiality and security. The data collection processes of the two companies are designed with privacy first in mind, even down to the collection kit that strives to preserve the anonymity of their customers.

Laura Lyman Rodriguez, Ph.D., is the director of Policy, Communication and Education at the National Human Genome Research Institute at the National Institutes of Health (NIH). She oversees how the NIH collects study participant data, implements privacy safeguards and data security measures, and then transparently shares this data with researchers—in that the inquiries themselves are not hidden from the public—while protecting data and privacy.

But Chahine pointed out that DNA is anything but secure. “Why would someone hack our servers to access my data when you could follow me to a coffee shop and grab a sample from my used coffee cup?”

Chair Dr. Gutman immediately zeroed in on the coffee cup. “Here’s the important point that it makes,” she responded. “The questions of personal privacy and genome sequencing do not boil down to ownership. I cannot own what I leave behind.”

Vice Chair James Wagner, Ph.D., inquired about the degree that data use and data access can be separated.

“In my world,” responded Rodriguez, “They are very much tied together. If the access is not provided in appropriate ways, it constrains the kinds of questions that can be asked.”

Access is important, Chahine stated. “There’s research that’s important that researchers are not tackling. The more access that we can give, the more we would be moving forward.”

A critical point on privacy would appear to be the limits on removing identifying characteristics from genomic data so that researchers could use the data without touching on privacy concerns. When asked by an audience member on the permanency of making personal data anonymous, Rodriguez did not consider ‘de-identification’ as absolute.

“We should operate under the assumption,” Chahine added, “that if ‘re-identification’ is not possible now it will be in the future.”

1 Comment to Do privacy concerns follow the coffee cup?

  1. August 2, 2012 at 7:33 am | Permalink

    From this post alone, Dr. Gutmann appears to be conflating privacy and ownership. Privacy does not require or entail ongoing ownership of waste; in the case of a coffee cup, it simply requires that others desist from staking claim to that waste.

    If I remember correctly, there’s a Supreme Court ruling that says a police officer may only investigate a citizen’s waste if the trash barrel is left open. If the trash can is covered, that citizen is presumed to carry an expectation of privacy, and any attempted recovery or re-identification of that person’s waste by the state is an egregious violation of their privacy.

    In theory, a coffee cup left behind on a table as a result of haste, forgetfulness or laziness legally becomes a piece of the commons. Until it finds its way to the trash, that used cup is subject to inspection; the law, to my knowledge, would not currently determine the “in-the-open” (ITO) coffee cup to be an invasion of privacy, but social custom certainly would consider it so.

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