The Privacy Paradox in Genomics by Dr. Paul Cottrell

Introduction 

With the advent of information technology, we are now able to collect and analyze large sums of data. It is not uncommon now to hear in the mass media terms such as artificial intelligence, business analytic, data mining, neural networks and the like. This is somewhat of a new phenomenon because of the cost of computing is reasonable for performing complex calculations and the storage of large sums of data. In the medical industry informational technology is deployed in many ways, e.g. medical imaging, patient record keeping and biochemistry research. There are some that propose that this informational technology boom will be utopic and societies will be more efficient—there is a downside that is quite dystopic. This downside is an erosion of privacy and security of such personal medical information. In this essay the I will explore the privacy paradox and the positive and negative effects of this informational technology boom in the medical industry. 

Privacy Paradox 

Personal information is usually considered private information and not for public domain consumption. Many countries have laws in protecting citizens from ill use of private information, especially in the context of medical information (Büschel et al., 2013). The privacy paradox is defined as the contradiction between individuals’ motivation in allowing the usage and processing of personal information and the fear of security breaches of this information to an unauthorized person or institutions (Büschel et al., 2013). A perfect example of this is when Ellen Richardson was denied entry in to the United States of America due to a history of clinical depression (Hauch, 2013). How and why should a foreign entity have access to medical records of foreign passengers? In this case the usage of Ms. Richardson’s information was for national security reasons, albeit a bogus reason. This leads us to the positive and negative effects of the power of informational technology. 

Positive and Negative Effects 

There are positive effects with the use of information technology with personal medical data. For example, if there was a centralized database of all the medication that patients are on then an artificial intelligent system can flag dangerous medication combinations. Another possible positive effect with the use of personal medical data is in the realm of genetics. If every patient has their genome sequenced, then physicians would be able to leverage this genomic information and provide customized care and provide better surveillance on potential diseases that have not shown clinical signs yet. With the implementation of data mining, genomic data of societies can provide novel insights of diseases within subpopulations, which would potentially help in providing customized care for patients. The negative effects of increase collection of personal medical records are many. For example, hacking of personal information is a real risk. Personal identities can be stolen and to reclaim these identities may take years and involve legal actions involving large monetary costs (Taitsman et al., 2013). Another important negative effect is the potential scope creep of collecting personal data. There seems to be a trend in the United States of America that both social media companies and government agencies are trying to collect every possible digital footprint of a person. These social media companies are using this data to sell to advertisers or private corporations for profit motives. As for government agencies, they use this digital footprint for national security and tend to curtain the civil liberties of a citizen. For example, if there where persons that where predisposed as a carrier of a certain deadly disease that government might curtail the movement of such citizens, e.g. HIV positive persons. 

Conclusion 

In the final analysis, it is important to question data collection and understand how personal information is protected and how to create boundaries, whereby this data is not used to the detriment of the citizen. 

References 

Büschel, I., Mehdi, R., Cammilleri, A., Marzouki, Y., & Elger, B. (2014). Protecting human health and security in digital Europe: How to deal with the “Privacy Paradox”? Science and Engineering Ethics, 20(3), 639-658. doi: 10.1007/s11948-013-9511-y 

Hauch, V. (2013, November 28). Disabled woman denied entry to U.S. after agent cites supposedly private medical details. Toronto Star. Retrieved from https://www.thestar.com/news/gta/2013/11/28/disabled_woman_denied_entry_to_us_afte r_agent_cites_supposedly_private_medical_details.html 

Taitsman, J. K., Grimm, C. M., & Agrawal, S. (2013). Protecting patient privacy and data security. The New England Journal of Medicine, 368(11), 977-979. Retrieved from www.nejm.org.