Many privacy and security concerns have arisen with the rapid advancement of healthcare technology tailored to specific individuals
Built on the successes of modern genomic medicine and the completion of the Human Genome Project in 2003, scientists have been developing a coordinated system of targeted treatment and prevention plans tailor-made to each patient’s DNA. Personalized healthcare tailors treatment and prevention plans to each individual by accumulating medical and non-medical data. It is customized for the patient’s singular needs -- specific to their gender, age, medical history, and other individual factors -- and monitors symptoms and disease progression on a personal level. Because it is an emerging biomedical field, there is limited data about its efficacy, and very few studies have been done on its ethical violations. A survey in 2018 revealed that about two-thirds of Americans have never heard of the phrase. This lack of awareness raises the question: What are the implications of personalized healthcare for privacy and data security?
Currently, personalized medicine has enabled molecular profiling, or accessing genetic data that is unique to an individual. Identifying what genes have mutated and recognizing biomarkers is the key to correctly predicting different reactions to medicine, allowing scientists to detect cancer, diabetes, and obesity early on. It enables physicians to select the most suitable treatment plan based on data from sensors, medical instruments, trackers, and smartwatches. In addition, companies may collect anonymous, aggregated individual data to expand the population data repertoire. While this helps balance out selection bias, it may also lead to issues with privacy and confidentiality. It is impossible to weigh the pros and cons of revealing private information and permitting its use without a comprehensive understanding of its potential uses. Patients can only consent to outside parties accessing their private information if they are fully aware of what may be at stake.
Furthermore, data brokers can collect information from various sources, build comprehensive data profiles about each individual, and sell them to government agencies or private institutions without our knowledge. This could affect safety and security, the tracking of criminals, and human activity as a whole. It could be used to generate online advertisements that track people’s desires or fall into the wrong hands and make them the target of hate crimes and discrimination. Most notably, discrimination and unequal treatment based on genetics are likely to be perpetuated. Personalized healthcare may be exclusively accessible to the elite, reinforcing the divide between the upper and lower classes.
Considering these factors, it is impossible to determine whether the benefits of personalized preventive healthcare outweigh its potential dangers. One possible method for exploring these questions could involve conducting in-depth interviews with patients who have received personalized healthcare, healthcare providers who have implemented personalized healthcare, and experts in the field of bioethics. The data collected through these interviews could be analyzed using qualitative methods to identify common themes and patterns. Appropriate regulatory measures must be implemented to fully integrate personalized medicine into public healthcare. Such legislation should include redefining data privacy and concrete methods to protect against data brokers and data leaks.
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