Your Gene Sequence Might Not be Secure

Stonybrook University had a mandatory class about Social Work’s role in Health Care. In this class we were asked to read a book about ethical dilemma’s in health care. No book seemed more appropriate to me, as a researcher, than The Immortal Life of Henrietta Lacks, written by Rebecca Skloot (seriously a good read). For those not familiar with the story Henrietta Lacks, a black tobacco farmer who died in 1951 from cancer, is the mother of the HeLa Cells. These cells are the most used cells in human cell research and have assisted in the development of  many vaccines and medications, and so much more in the medical field. All of this was done without her, or her families, consent or knowledge.

In a nutshell, Henrietta’s case  breaks most ethical and moral codes which exist in our current health care system, and now it seems we might have the Sequel to The Immortal Life of Henrietta Lacks at hand. In another unconsented move, researchers last week released Henrietta’s Gene Sequence online without consent of her family. Oddly, is isn’t currently required to have consent when publicizing sequenced information and this information is unfortunately easy to identify even when published anonymously.  There are just so many things wrong with this…

The author of the original book offered her insights on this in an article published March 23rd with The New York Times, and the below about sums it up:

“As Francis S. Collins, director of the National Institutes of Health, says: “This latest HeLa situation really shows us that our policy is lagging years and maybe decades behind the science. It’s time to catch up.” The regulations governing this sort of research were written in the 1970s, long before anyone imagined what you could learn from a bit of DNA. They are largely based on the now outdated belief that if samples are “anonymized” (i.e., your name is removed), there’s no need to get consent before using them in research.”

I cannot agree more with Francis Collins statement. Health information protection policies are highly lacking in our digital age, where anonymous isn’t an easy thing to do. Research teams take extreme cautions to keep information anonymous (think locked computer files in password accessible computers located only behind doors that must lock at all times in buildings with card accessed doors and guards), but if the policies don’t cover particular areas (such as what can be placed online) there are gaps in that protection even if protocol is being followed. This makes this case not one independent error, but the error of an entire system that needs revamping:

“The publication of the HeLa genome without consent isn’t an example of a few researchers making a mistake. The whole system allowed it. Everyone involved followed standard practices. They presented their research at conferences and in a peer-reviewed journal. No one raised questions about consent.”

Luckily, the Lacks’ family contacted the research team who then apologized and removed the sequence from the public eye, but not before folks were able to download it. Something which easily could have been prevented.

This is indeed a new age in research consenting, and there will be much work ahead to protect our health information. To get there we as researchers and social workers must always remember the greater good of our clients rather than blindly following our ethical rules and regulations. We MUST question and keep our policies up to date with the culture we work and exist in. Perhaps this case, as Ms. Skloot’s puts it could “may finally help create laws to protect her family’s privacy — and yours.” We could only hope.

Written by Georgianna Dolan-Reilly, LMSW
SJS Staff Writer