Lacks Privacy

Imagine that you woke up one day to find that all your most private information—social security number, bank account details, and credit card numbers—had been published online. Now imagine that instead of numbers, your name was attached to a string of the letters. Not just any letters, but arguably the most personal set of letters—A, T, G, and C—the ingredients of your DNA. This is exactly what happened to Henrietta Lacks. In March 2013, sixty-two years after Lacks’ death, a group of scientists published the complete sequence of her genome, leaving her descendents and the public to decide how to handle the story of Lacks’ past, as well as the future of genetic information across the globe.

The sequence was published in order to allow researchers around the world to be able to independently verify the identity of the cells with which they were working, since contamination from other cell lines is a common problem associated with cell culture. However, its publication simultaneously exposed private information regarding the Lacks family: the DNA is full of hundreds of thousands of sites where mutations can occur, and those mutations could reveal an individual’s predisposition to certain diseases. If this information were to get into the wrong hands, patients (and their relatives) could be denied health insurance on the basis of a high-risk profile. Some argued against this potential danger, claiming that modern science was not sophisticated enough to allow for interpretations regarding the health of the Lackses based on the raw HeLa genomic sequence. Several scientists disproved this suggestion using a simple, freely available web tool; however, their findings were kept private. Others in favor of the public availability of the genomic sequence argued that HeLa cells had acquired so many changes in their DNA since 1951 that their genome no longer revealed any information about the Lacks family past or future. This suggestion, however, was similarly shot down by genetic analysis. Since the Internet has the advantage and disadvantage of allowing information to be shared rapidly, the NIH knew it had to act quickly, or not act at all.

Although the NIH swiftly restricted access to the HeLa sequence, the sequence was posted long enough that 15 people to downloaded it, and many others considered the implications. Now, to gain private access to the genome, researchers must apply to a committee, which is comprised of researchers, as well as members of the Lacks family. Although this decision answered the ethical question of privacy, it raised a new one regarding open sharing of knowledge. The restricted access to the HeLa genome sequence was anticipated to slow progress the field of biomedical research. On a more general level, though, restricting access to human genomes might prevent the generation of personalized medicines—therapies catered to an individual’s genetic makeup. The publication of the sequenced HeLa genome may have exposed the genetic history of a family, but the public response has foreshadowed the future era of genetic privacy.