A New Era of Privacy

In today’s high-tech world, our privacy concerns typically revolve around usernames, passwords and PIN numbers. But one piece of personal data has been overlooked until recently: your genetic information.

Much like our usernames and passwords act as unique digital identifiers, our genomes represent unique biological identifiers, distinguishing us from others. Each of the cells in our bodies contains and protects information encoded in our DNA, collectively known as our genome.

The technology to sequence our genomes has existed for years now, most notably helping scientists complete the Human Genome Project in 2003. A major hindrance to the project was the time and money needed to sequence DNA.

Technological advances have allowed companies, including San Diego-based Illumina, to lower costs. As a result, genome sequencing is becoming a more mainstream tool for clinicians to use in diagnoses and therapies.

Genetic sequences can help determine whether you are likely to develop diseases like cancer, heart disease or Alzheimer’s. With that clue, clinicians have a better idea what treatments to recommend to patients.

Scientists and physicians agree that DNA sequencing will revolutionize “personalized medicine.” Rather than treating a type of disease, physicians will use genetic information to cater therapies to the individual, leading lead to more effective regimens, fewer detrimental side effects and lower healthcare costs.

While few disagree about the benefits of genomic sequencing in the medical field, the different ethical issues, like many technological advances before it, are just beginning to be debated.

Because each person’s DNA is unique, privacy becomes a major issue. When a person’s DNA is used for sequencing, although clinicians are only interested in certain genes known as “markers” for a disease, they have access to a person’s entire genome – including genetic information outside the bounds of a particular disease. Who should have control and access to this information?

This is trickier than concealing passwords or usernames.

While we all have different genomic sequences, we are not all trained to understand and interpret the meaning of this information. For anyone to be able to use the information for research and development, we need to grant access to experts to examine and interpret this data.

Recently, the Food and Drug Administration ordered 23andMe, a personalized genomic sequencing company, to stop marketing its health-related genetic tests. The FDA decided that interpretation of the genetic data needed to be regulated before consumers could act on it, but said consumers could use the information as medical advice. 23andMe has since stopped marketing any health claims, but still provides genealogical data as well as personalized sequencing.

Some privacy concerns have already been addressed in the Genetic Information Nondiscrimination Act enacted by Congress. This protects people from discrimination based on genetic information for employment or health insurance reasons. The act protects equality while also raising awareness that genetic information is an important biological element that needs protection. As time passes, there are sure to be more regulations introduced that revolve around our genomes.

While most people’s instinct is to protect personal information, genetic sequences are vital to many scientific endeavors. Comparing genomes can help generate more predictive profiles of diseases to make better diagnoses. Genomic sequencing also helps in developing new drugs and more effective uses for existing drugs.

Our genetic information is what makes each of us truly unique. The desire to protect it is understandable. But to keep pace with society’s expectation for progress in science and medicine, we have to find a way to balance this need for privacy in a rapidly evolving field of study.

This op-ed is part of a collaboration with the Emperor of All Maladies Project, exploring cancer as it exists both publicly and privately. This is the third Common Read project organized by a science and education alliance including Grossmont College, Point Loma Nazarene University, San Diego State University, University of California San Diego, the Reuben H. Fleet Science Center, Sharp Health Care and the Center for Ethics in Science and Technology. Learn more here.

Christopher Abdullah is a graduate student in the Biomedical Sciences Program at UCSD and writes as a member of the San Diego Center for Ethics in Science and Technology. Abdullah’s commentary has been edited for clarity. See anything in there we should fact check? Tell us what to check out here. Want to respond? Submit a commentary.