By: Michael Schwartz and Alistair Bernhard
With the recent explosion of data collection by businesses looking to more effectively target their consumer bases, privacy has been an area of increasing importance. While many people often do not give a second thought to posting personally identifiable information to social media platforms like Facebook and Instagram, it’s important to consider that much of the technology we use creates a digital map, and a rather detailed one, of our day-to-day lives. Location tracking on our mobile phones map our whereabouts, websites track how we navigate the internet and the things we click on, and our virtual assistants (Amazon Alexa, Google Home) and other “smart” devices eavesdrop on conversations that we may otherwise desire to keep private. Personal genomics and biotechnology companies like 23andMe, Ancestry, and ORIG3N, allow people opportunities to provide DNA samples for genetic mapping. The reality of the modern age is that our data are everywhere. At a time when the topic of privacy is taking center stage, understanding the who, what, when, where, why, and how of data sharing is of paramount importance. Of the consumer data that are bought, sold, and otherwise traded between private companies and government institutions, what information comprises that data? Are the data being managed to maintain the integrity and security of the information from unauthorized access? The goal of this paper is to look specifically at DNA data, its potential use cases, and implications—both positive and negative—therein.
The next section of this paper will walk through the use cases and arguments for and against the use of DNA data. Table 1 below shows a summary of these arguments.
Table 1 – Summary of arguments, both for and against, using DNA data
|Implications in Crime||Relinquishing DNA privacy allows for crimes to be solved quickly and accurately; acts as a deterrent for future crimes||DNA taken and used without consent|
|Implications in Healthcare||Relinquishing DNA privacy provides opportunities for tailored medical treatment based on individual patient genetic profiles||Immoral access to DNA databases by insurance companies|
|Implications in Race Identification & Politics||DNA privacy is a non-issue since race and DNA profiles are mutually exclusive||DNA unwittingly to promote radical agendas in both race and politics|
Implications in Crime
On October 31, 2016, Indiana resident Damoine Wilcoxson was arrested and charged with two crimes: the murder of an 82-year-old man and two police station shootings. The crimes, originally believed to not be connected, were later determined related after a consistent genetic profile was identified from the evidence from the crime scenes in question. The genetic samples were compared against the Combined DNA Index System (CODIS) which matched with a sample from Wilcoxson. He was later charged, tried, convicted of both crimes, and sentenced to prison for 102 years (Schwartz, 2019). Had a previous run-in with law enforcement not necessitated taking a sample of Wilcoxson’s DNA, these two seemingly disparate crimes may never have been solved. Clearly, having Wilconxson’s DNA in a database allowed for the criminal justice system to hold a criminal accountable for his heinous acts.
According to Jennifer Doleac, a professor of economics at Texas A&M University, discovered that DNA databases also serve as a preventative crime tool. Looking through the lens of behavioral economics, Doleac’s approach considers criminal behavior “as a rational response to competing incentives, a calculus of ‘should I, shouldn’t I’ based on potential benefits and costs to the would-be offender.” Essentially, increasing the likelihood of getting caught has a dampening effect on the likelihood of a would-be offender actually committing a crime (Schwartz, 2019).
On the other hand, while this kind of testing has been referred to by the public as a “silver bullet,” many innocent individuals have been convicted due to the process failing them (Shaer, 2016). Many people neglect to realize that multiple factors contribute to accurate identification, “including the quality of the DNA sample, the number of genetic markers analyzed, whether the sample was prepared properly, and the ability of those doing the analysis to interpret the results” (Leahy, 2018). It is clear this process is an arduous one, and along the way, a lot can and does go wrong. The misuse of DNA has led to many individuals being sentenced to prison for crimes that they did not commit, under the pretense that the system is perfect and cannot fail. Moreover, this same sentiment is used to convince juries to convict innocent people. People like Josiah Sutton, whose DNA was found at a crime scene in which a woman had been assaulted (Shaer,2016). He served four years for a crime he did not commit, the DNA taken from the scene was not processed properly, and his alibi was in fact correct. A more famous case was that of Amanda Knox, who served six years in prison for an alleged murder due to DNA findings (Davis, 2017). Inaccurate evidence was used to convince a jury to convict her; the DNA was processed poorly and should not have held up in court. The FBI has even gone on record stating that “it had reviewed testimony by its microscopic-hair-comparison-analysts and found errors in at least 90 percent of the cases” (Shaer, 2016). A DNA database would be an awful idea as it is incredibly inaccurate. In addition, it encroaches on an individual’s privacy. People when taking DNA tests do not sign up to be a part of a criminal database, and even if they did, a company could quite easily change the contract and use or sell a customer’s DNA in any way they see fit. Furthermore, if an individual is arrested and processed by the police. Their DNA is taken and even if they are found innocent by a court of law. In many states, they keep the individual’s DNA in the database, and it cannot be expunged. While the states that do allow for innocent people’s DNA to be removed, the burden lies on the innocent person. In which they must get a lawyer, pay all the fees, and go through a process that many cannot afford (Innocence Staff, 2017). The fact that these people’s DNA was taken, and they must repurchase their privacy is proof that this system is flawed.
Implications in Healthcare
In his second term in office, President Obama called for the creation of a database containing millions of DNA samples as part of a goal to tailor healthcare to people’s individual needs. His idea was that using DNA data would offer an opportunity for the medical establishment to offer “precision medicine” to those in need of care, thereby reducing medical costs and improving patients’ well-being by “anticipating disorders before they become serious problems” (Lazarus, 2016). Algorithms could piece together various and sundry pieces of information—patient records, doctors’ notes, hospital claims, social media posts—and alert physicians of patients at increased risk of developing a particular disease or chronic condition. Obama noted that “precision medicine gives us one of the greatest opportunities for new medical breakthroughs we’ve ever seen” (Lazarus, 2016). According to the Mayo Clinic, genetic testing is vital to determining an individual’s risk for developing specific diseases and can provide a clear roadmap for screening and subsequent treatment. Presymptomatic and predictive testing provides valuable insights into the risk of developing specific conditions based on familial predisposition and history. Diagnostic genetic testing can be used to confirm a diagnosis after a patient has begun experiencing symptoms, if the suspected illness is caused by genetic mutation. Pharmacogenetic testing may serve as a more accurate guide to maximize the efficacy of administered medications and dosing as part of a treatment plan (Mayo Clinic, 2020). Given the “essentially infinite” combinations of DNA that humans can embody, clearly, applications of DNA data in healthcare are of profound value (Smith, 2017).
However, while there are so-called benefits for the healthcare business to use DNA to better their practices, it can also be to the detriment of society at large. In America, the insurance business is a multi-billion-dollar enterprise, and if they take on too many high-risk customers it may cut into their profits. So, these companies use DNA databases to mitigate risk, and financially benefit. Many life insurance companies have been using consumer’s DNA data to find out whether they have been lying about pre-existing conditions, to void high-risk contracts. The American Council of Life Insurers (ACLI) claims that, “a genetic test is only a marker of a future risk and is certainly more insurable (e.g. less risk) than known disease” (Song, 2018). While this sentiment sounds great, DNA data could cause higher premiums for people that have the possibility of contracting genetically-inherited illnesses; or worse, it could mean people are deemed uninsurable. In addition, these tests are not comprehensive, which means they do not look at all your DNA (Brodwin, 2019). Consequently, the results from these tests are not accurate enough to reliably predict one’s genetic predisposition to an illness, yet ACLI and insurance companies will use this data to discriminate against people, no matter the accuracy. Moreover, while insurance companies are happy to use DNA data to their advantage, it is unlikely that if said customer has healthy and robust genetics that he will get cheaper premiums. Thus, these companies have everything to gain and nothing to lose. This is a massive invasion of people’s privacy as I am sure that when they sent their DNA into Ancestry, they did not sign a document that allows life insurance companies to profit off their data. Moreover, if the person’s grandson uses one of these DNA testing kits, then they could potentially get higher premiums. While they did not permit the use of this data, it is and always will be used against them.
Implications in Studying the Differences Between Races
According to the American Association of Physical Anthropologists, “race is not a useful or accurate term to describe patterns of biological variation that exist” (Raff, 2019). The Association argues that biological variation, whether genetic or represented in our physical traits, “may be used socially and politically for categorizing people (e.g. “white,” “black,” “Hispanic”) but does not actually align with ‘pure’ or discrete groups” (Raff, 2019). Because race is not a “useful framework for discussing or investigating human biological variation,” DNA data therefore cannot be considered discriminatory nor prejudiced. When DNA is used to identify a specific person, race is not applicable since it’s nothing more than a fabricated construct designed to bring structure to society; race is a “cultural phenomenon” (Raff, 2019), rather removed from genetics. There are some civil rights activists who believe that databases comprised of DNA data mirror racial disparities found in policing strategies, arrest practices, and incarceration rates (Chow-White & Duster, 2011). The reality is that “our collective genetic history is messier, richer, and more complex than concepts of race” (Raff, 2019).
Some experts have claimed that DNA is proof that humankind is remarkably similar, with any two people being at least 99 percent identical (Harmon, 2007). Due to companies like Ancestry and 23andMe, scientists have access to vast amounts of DNA data, and they are using it to prove the differences in race (Harmon, 2007). This conclusion is dangerous as it could cause a rift in society and demographics. For instance, one DNA researcher claimed in a recently published article that he believes people of Asian and European descent have naturally higher IQs than those of African descent (Harmon, 2007). Dr. Marcus W. Feldman, a biological science professor at Stanford University, claimed: “if we do not start explaining DNA better, it could spark a new era of racism” (Harmon, 2007). He also went on to discuss that DNA testing is not sophisticated enough to figure out whether potential IQ can be found in DNA. A DNA database is not a perfect science, and when it is misused, it can have detrimental effects on society and people’s lives. This data is being used against the wishes of the people, as I am sure many people would not want their DNA information to be used to prove differences in race. Many societies are already divided by race, gender, or sexual orientation, and it is an invasion of privacy to use these DNA databases to push a biased agenda without the wishes of said person’s permission.
Furthermore, there have been studies conducted to find out how DNA affects what people think, and more importantly, who people vote for. For instance, the twin studies, by Dr. Nick Martin and his colleagues, suggest liberal and conservative ideology is heritable. “The idea that political views have a genetic component is now widely accepted,” and it is referred to as genopolitics (Stafford, 2012). Ancestry has so much leverage and power over political parties with DNA data. They could easily sell a person’s information to political parties or lobbyists without the knowledge of their customers for money or influence. I am confident that many of the people that have used these DNA testing kits would not want the Democratic or Republican party using their DNA to gain the upper hand when there is an election.
Additionally, these companies store their data the same as other companies. Facebook and Amazon have been hacked in the past. So, there is a high possibility this could happen to Ancestry and 23andMe in the future. This could lead to DNA data falling into the hands of some questionable people, maybe even a foreign government. It is too dangerous to have these databases, and yet it seems this information is already too easily accessed.
A Nod to the Future
Giving privacy issues their due, especially as it relates to DNA data, is not an easy task. The benefits of analyzing DNA data stand to move humanity forward in productive and meaningful ways—crime deterrence, precision medicine, expansion of the field of genetics—while the potentialities of the drawbacks may exacerbate current issues of race and discrimination. With such divisive sentiment on either side of the debate, it’s hard to visualize the future of the privacy landscape. Joseph Carson, CSO at Thycotic, spends his days considering how his company may best provide their customer base the most consistently secure cloud-based privileged access management system for sensitive and/or proprietary data. As a leading professional of data security, perhaps Carson best captures the future of privacy noting that,
The end of privacy as we know it is closer than you may think. Privacy definitions are very different between nation states and cultures, however, one thing that is common is that privacy is becoming less and less of an option for most citizens. In public, almost everyone is being watched and monitored 24/7 with thousands of cameras using your expressions, fashion, walk, directions, interactions, and speech to determine what you need, what you might be thinking, who you are going to meet, who is nearby, and even algorithms that determine what your next action might be.
If the end of privacy is really upon us, it begs the question…at what point is protecting privacy not worth sacrificing the potential positives that stand to benefit society at large? Of course, we must also ask…is society worth it?
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