Privacy Rights In A Digital Era of Genetic Testing and Government Hacking

The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits employment discrimination based on genetic information, including when it comes to health insurance.  It was a rare proactive effort by Congress to secure the rights of citizens before they could be threatened by economic forces and technological advances.  While GINA outright bans discrimination based on genetics, the law also ensures discrimination is banned in practice by prohibiting employers from requiring involuntary genetic testing and/or coercing voluntary participation in genetic testing.  The Preserving Employee Wellness Programs Act is, however, challenging the safeguards of GINA.  Under the proposed legislation, employees could stand to receive a 30% reduction in their healthcare premiums, if they participate in a voluntary wellness program that includes genetic testing.  Due to economic forces, this would likely translate into a 30% increase for the premiums of everyone, but only those who do not participate in the program would have to pay the penalty.  
 
In practice, the proposed legislation would pressure employees to sacrifice their right to privacy for their economic interests.  Privacy rights exist, in part, to safeguard individuals from what others might do with private information.  Although it is logical to charge people more when they use more, the primary reason for health insurance is to make healthcare accessible to those who cannot afford the care they need when they cannot afford it.  When it comes to health care, genetic testing offers insurers a greater understanding of their clients potential needs.  When it comes to higher premiums for those with increase genetic risks, genetic testing becomes a means of minimizing costs as well as maximizing profits and bonuses by sacrificing those in need. Genetic testing is not, however, the only newly obtainable information that insurers can use to discriminate nor are insurers while employers are not the only ones who can use private information to discriminate and cause harm.

It is important to recognize GINA did not ban the practice of genetic testing or prohibit the development of such technology.  Whether information about a person, i.e. personal information, is readily available or obtainable does not matter as private information still belongs to the realm of privacy, even when others have the ability to access it.  When it comes to protecting the rights of people, the ability to obtain information is not necessary the biggest issue.  It is what the Law allows others to do with the private information of individuals that matters the most.  Using the force of Law to prohibit individuals, private entities, such as businesses, and government agencies from gathering potentially sensitive information is a safeguard to prevent these actors from being in a position to abuse private information.  It is also a means to protect people from those who seek to use private information to do harm.
 
Looking at the so-called “Vault 7” revelations from Wikileaks, which provide insights into the hacking tools developed and widely used by the CIA, as well as their allies, to turn virtually any digital device into a listening post, the need to establish legal limits on access to private data and guarantee the privacy rights of citizens is made obvious.  The unrestrained search and seizure of digital devices by Borders and Customs Protections officials, who are supposed to be screening for passengers trying to smuggle dangerous people and things into the country, instead of snooping into people’s emails for the NSA, CIA and FBI, underscores the lack of respect the national security officials have for privacy rights.  When FBI Director James Comey said “There is no such thing as absolute privacy in America,” which is correct, he perfectly summarized the attitude of America’s national security apparatus.  In discussing the threat of encryption to law enforcement efforts, he also revealed the flawed thinking that law enforcement has a right to have all information that is obtainable.  
 
The first objective of any law enforcement agency is to prevent crime.  Information gathering and any other real world experimentation comes second to safeguarding people, which includes their lives and their rights.  It is not necessarily improper for law enforcement to build mechanisms to gather personal data or to actually gather private information under appropriate circumstances.  It is when they are allowed to gather someone’s personal data and how they are allowed to use that data matters.  This is a need that has not changed, or will not change, simply because more and more private information has become obtainable.  Like all rights, the right to privacy only has meaning when government respects and protects the privacy of individual.  When people are involved in criminal acts, they lose that right to privacy.  As nation that strives to presume people are innocent before proven guilty, it is especially important for government to do its part, especially as private information becomes easier and easier to acquire.