Biometric Data and Privacy

Duo Xu

Imagine having an app that would have personalized updates and treatments based on your genetic profile, a watch that would alert you if there are allergens in your food, or a wearable device that would give you medical advice if you an at risk of any illnesses. Innovative technologies such as these are right around the corner for us, and they are made possible by utilizing our biometric data. Biometrics is defined as the science and technology that can be utilized to verify the identity of an individual based on permanent and distinctive physiological characteristics or behavioral traits, and biometric data is defined as data that are driven by biometrics, which is any statistics related to the body. There are various ways in which biometrics can be categorized, such as physical biometrics, behavioral biometrics, and chemical biometrics. Physical biometrics involves the measurements of the body such as fingerprints, iris, and facial characteristics. Behavioral biometrics is the way a certain task or order is performed by an individual. This could include walking, body dynamics, voice, and signatures. Lastly, chemical biometrics are the chemical clues within our body such as odor, DNA, and RNA. I’ve always been intrigued by the uniqueness of our biometric data, and how we can utilize it to identify individuals. There was something very magical about the ability to retrieve biometric data when I was a child. To me, it was like a game of ultimate hide-and-seek. I knew nothing of the term “biometric data” when I was 5 of course, but the idea of being found amongst millions and millions of kids with just my fingerprints or a single strand of hair excites me and made me feel very special. As time went on, my relationship with biometric data went from a very pure fascination with a game to a growing concern with our digital footprints and criticism of the framework.

There are a lot of benefits of incorporating big data in healthcare, such as developments in medicine, epidemic outbreak prevention, and treatment cost reductions. By utilizing comprehensive data-driven reports, healthcare officials are able to read warning signs to predict and treat disease at an early stage and generate critical health maps that would highlight underserved locations for better treatment distribution. The use of data in healthcare allows for more strategic planning and treatment analysis on patients’ motives and demographic backgrounds. By tracking the patient’s biometric data, doctors can track behavioral patterns and determine the effectiveness of medicines more efficiently. Medical researchers may also consolidate and share patient databases and treatment plans to formulate better cures for diseases. So, what’s the catch to enabling mass data collection at scale if there are so many medical conveniences? Well, as unprotected biometric data leakage has become a high-risk threat, one of the biggest challenges is being able to protect biometric data while retaining the practical performances of identity verification systems. Biometric data security is the protection of biometric data from unauthorized access and use.

As our biometric data becomes a gateway to receiving the benefits that come with technological advancements, how much exposure should we allow to our data? Medical conditions and health history have already become some of the key factors in determining certain job occupations, such as military services, but these medical records are kept private from the public and are only used in determining the draft. Many of these qualifications are invisible conditions, such as astigmatism, menorrhagia, vision, and ​​valvular heart diseases. Should the time come when personal medical data becomes mandatory public records in hopes of great medical consensus, these very factors that helped with medical advancements will inevitably become factors that would hinder personal rights. They could potentially affect one’s school acceptance rate, job opportunities, public relations, and socioeconomic standings. The rights would be taken away from individuals with invisible conditions that otherwise would not have had they kept their medical conditions secret. Just imagine if another candidate was picked over you due to your family history of diabetes, sounds unfair right?

Established in the 1990s, the Health Insurance Portability and Accountability Act, or HIPAA, provided regulations of medical health records, which also includes the anonymization associated with genetic testing. In recent years, however, genetic sequencing has become more effective and prominent in fields of research, and thus the Genetic Information Nondiscrimination Act (GINA) was passed in 2018 to protect against discrimination against individuals based on their genomes by insurance companies and employers. What does this mean on a personal level, would it eliminate the issue of privacy completely with biometric data in healthcare? I believe that this would only address the issue on a very surface level, and not the root of the cause, which is the ownership of privacy in the United States.

Privacy could mean many things in the United States, it could mean money, power, and status. One thing that it does not imply in our country, is dignity. The equivalence of privacy to dignity is shown in the European concepts of privacy through GDPR, where the right to be forgotten is addressed, but relatively foreign in our laws. However, that does not mean that it is foreign to us as individuals. My father is a very headstrong person and falls into the stereotype of a big strong man that doesn't want to show emotions. To him, the state of his body is something that is strictly between his doctors and himself. Even as his family, we were not given the privilege to know what type of treatments or medications he is undergoing. This type of extreme secrecy is my father's way of expressing his care and pride, for it relieves us, whether we want it or not, of any obligations to follow up on his medical status. It is also his way of upholding that pristine image of an unbreakable man, the head of the household, and someone that we can always rely on. Though this behavior stems from a position of care and pride, his secrecy with his own medical data could also be an extremely difficult situation to deal with, as he would withhold his information from his doctors as well. From an individual's point of view, he should have the right to have complete control over his biometric data, but from a medical standpoint, it is a very distressing behavior.

As a society, I cannot tell you whether we should support or condemn this type of behavior or not, but I do believe that the protection of data privacy should not be the responsibility of the consumer. The security and privacy protection around data should be a challenge that our data frameworks could embrace, and the amount of influence that data should have on an individual’s rights, if any, remains a question that we should reflect on as a society.

References
“Big Data in Health Care and Patient Outcomes.” Big Data in Health Care and Patient Outcomes. Accessed May 11, 2022. https://publichealth.tulane.edu/blog/big-data-in-healthcare/.
Durcevic, Sandra. “18 Examples of Big Data in Healthcare  That Can Save People.” datapine. datapine, March 2, 2022. https://www.datapine.com/blog/big-data-examples-in-healthcare/.
Liu, Y., Ling, J., Liu, Z. et al. Finger vein secure biometric template generation based on deep learning. Soft Comput 22, 2257–2265 (2018). https://doi.org/10.1007/s00500-017-2487-9.