Should Your Genetic Information Be Kept Private From Scientists?
The controversy of genetic privacy in comparison to medical privacy is an emerging topic in biotechnology. Should we keep our genetic information private or share it to potentially cure diseases?
“With the ability to identify genes from a blood sample or even a single cell, the risk of a blood draw was no longer just a minor infection or the pain of a needle stick—it was that someone could uncover your genetic information. It was about violation of privacy.” - Rebecca Skloot, “The Immortal Life of Henrietta Lacks”
In 1951, a doctor at Johns Hopkins hospital took cells from patient Henrietta Lacks, who he was treating for cervical cancer. He found that, uniquely, her cells did not die shortly after they were removed, but instead continued to divide indefinitely- the first ‘immortal’ cell line. He didn’t tell Lacks about this innovation, and her family did not hear about it until decades later, when researchers came to ask them for samples of their cells.
The case of Henrietta Lacks in regards to medical consent and privacy has been thoroughly dissected. However, it’s also a good example of an emerging topic in biotechnology: genetic privacy, and whether or not genetic privacy should be treated as something separate from medical privacy.
In 2013, a group of German researchers published the DNA code for Lacks’ cells, otherwise referred to as HeLa cells, without consulting Lacks’ family beforehand. However, it could be argued that because her children share much of her DNA, they should have had a say in the matter, as a way of defending their medical privacy. In this way, genetic privacy is considered a part of medical privacy.
David Korn of the American Association of Medical Colleges believes that genetic privacy and medical privacy must go hand-in-hand. “There is no feasible operational way that you can carve genetic information out of the medical record for purposes of rational legislative or regulatory oversight,” Korn said. His argument is based on the fact that so many diseases, such as sickle cell anemia or many types of cancer, are genetic diseases.
In order to fully protect a patient’s genetic privacy, information about any of their genetic diseases would have to be excised from their medical history. The gaps left behind could prove a serious problem to physicians looking to diagnose and treat their patients.
Things get a little dicey when you consider companies like 23andMe, a genotyping service that provides personalized genetic reports, which includes everything from how likely you are to be a morning person to how likely you are to develop Parkinson’s disease. While they do provide health information, they’re not a medical provider, and therefore are not subject to HIPAA regulations. They do make an effort to protect user privacy, stating that they “will not share your genetic data with employers, insurance companies, public databases or 3rd party marketers without your explicit consent.” However, they are not required by law to make that promise. In fact, it could be argued that they shouldn’t make that promise.
HeLa cells have saved millions of lives. The polio, HPV and covid vaccines were all developed using HeLa cells, as were several cancer drugs and multiple research methods. There’s a distinct possibility that open sharing of genetic information, such as the genomic sequences that 23andMe gathers, could do the same. If researchers were allowed easy access to millions of genomes, they could use the information to further research on a variety of genetic diseases, including Parkinson’s, Alzheimer’s and even cancer. Treating genetic information like medical information would limit the good that widespread genomic knowledge could do.
I would fall back on what the Declaration of Helsinki decided in 1975: “Concern for the interests of the subject must always prevail over the interests of science and society.” We can’t remove people’s privacy for the possibility of progress, so it’s probably best to regulate genetic privacy in tandem with medical privacy. Let me know what you think.
Best,
Grace for Don’t Count Us Out Yet