Sunday, June 10, 2018

Science, the Right to Privacy and Big Brother

I grew up in a world largely devoid of science. My childhood television programs exhibited detectives that worked on hunches and tips and informants. But, they did not rely on science. Science was not about crime back in the day, it was about going to the moon. That endeavor was repeated and reinforced in class after class. 

After law school, I quickly learned that much of my chosen profession is in fact about science. I came into contact with physicians, chemists, engineers, architects, and more. I learned about the scientific method, experiments, and hypothesis. My practice was dependent upon understanding their science well enough to articulate it to a judge or jury, and being able to interact with the experts whose scientific opinions underlay so much of the law. 

Somewhere in the midst of my personal historical journey, Hollywood likewise evolved. I recall Quincy stumbling into my consciousness, a medical examiner who could see more than those detectives surrounding him. Along came Crime Scene Investigation or "CSI," which morphed into CSI Miami and CSI New York. I watched as Abbie on NCIS was able to perform magic (science) in unravelling the facts of crimes based on otherwise confusing physical evidence. 

Since the 1970s, seemingly, science has become pervasive. At times, it has become miraculous. Diseases have been challenged and in some cases eradicated. Outcomes have become common, which were unthinkable in my youth. And, the law has struggled to keep pace with this changing paradigm. 

The new century brought news that the human genome had been decoded. The complexity of our being laid bare. The very definition of who each of us is expressed in the hundreds of thousands of "pairs" of chemical composition that define us. An incredible feat of science. And it led to legal implications. 

The Gaurdian says that the first criminal conviction using DNA evidence occurred years earlier in 1986. The killer of "15-year-old schoolgirl called Dawn Ashworth" was brought to justice in part due to the "fingerprint" of his very existence, his DNA. The Innocence Project arose from a different perspective, the use of DNA to prove innocence of those already convicted. It says that Kirk Bloodsworth was the first convict cleared in a death penalty case using DNA. The murder for which he was convicted occurred in 1984. Clearly DNA interpretation and science were being studied and understood long before the complete genome was decoded. 

The new century brought another innovation, promising great benefits. The Internet likewise had been a reality since Albert Gore invented it (a jest) in the 1970s. But it came of age in the 1990s and became ubiquitous this century. It made information more accessible, both good and bad. It changed the way we interact and communicate. The millenial and post-millenial generations were both born and raised not knowing what the world looked like without cell phones, the Internet, Facebook, Twitter and more. 

More recently, the world has been seemingly surprised (genuinely or not) by the invasion of their privacy by these progressions. In 2018 we have seen allegations that a free-functioning software altered 14 million Facebook user's privacy settings. We learned that Facebook either gave 87 million user's data to a third party or allowed it to be taken. Similarly, we learned that search engines like Google hoards volumes of data regarding our every move across the world wide web, what we look for, look at, shop for, read, and buy. 

The Big Brother world of our choosing (no one has to use the Internet, use Google, or join Facebook) encouraged and enticed us to forgo privacy in exchange for convenience. Other conveniences also made the news. The New York Times reported that an interface device (personal helper) called Alexa had recorded people's conversations in their home, and shared them. That likely did not shock many, because we have already heard that cell phones and webcams can be used to spy on us anywhere

With cell phones, webcams, search engines, the Internet, and more, we are gaining convenience, knowledge and more, but we are potentially sacrificing our privacy. That sacrifice came together recently in two stories that bear thought. 

In May 2018 there came news of the arrest of the Golden State Killer. The Golden State Killer is implicated in 8 killings, and clearly this is not the first time DNA has led to an arrest. But, the Los Angeles Times reported this police investigation was novel in that it compared crime scene DNA to information that genealogical researchers had voluntarily uploaded to a website-based database. The site user's intention is to find family members, relations, and better map their personal history. 

But, in this investigation, the police accessed this public information to attempt to find links to a killer. The Times describes 
"This technique, known as 'familial DNA,' has been controversial because of privacy concerns but has been used to solve prominent cases such as the Grim Sleeper as well as cases that barely make the news." 
Thus, "novel" but not unprecedented. The Washington Post was likewise impressed and yet concerned for privacy. As to privacy, it noted that millions have uploaded their DNA information to such websites. However, the Post reported another concern. It reported that "familial DNA searches, in fact, had an 83 percent failure rate in a 2014 British study." It asserts that "false positives" are a risk of familial DNA. In fact, NBC News reports that familial DNA led investigators to a different Golden State Killer suspect in 2017. 

Some ancestral services do not allow police access to their data. The Post reported that "23 and me" does not. However, other cites provide full access to anyone. And, the Golden State Killer is not alone, CBS News recently reported an arrest in an Arizona cold case, "the first mystery to be solved by Arizona police through the use of familial DNA," noted to be "a controversial emerging technique." 

But, in those cases privacy was given up, if not by the accused then by the family member or distant relation that submitted to the ancestry database. In those instances, actual DNA from the accused was later obtained through other means. Perhaps this is not really different than the requirement for a Breathalyzer (personal DNA) after a traffic stop on other grounds (familial DNA similarity). But are the Dystopian implications broader?

Of course, there are examples of tissue research and use. The most famous is likely the case of Henrietta Lacks, whose cells were taken for diagnostic care in the 1950s. Those cells have been experimented upon for decades, even after her death. She is the source of multiple medical breakthroughs, but the testing was done without her knowledge, as her cells were "bought and sold by the billions," although she was not compensated. It is a "riveting story of the collision between ethics, race, and medicine." 

The Conversation describes government regulation of hospitals and others using your blood and tissue (which would otherwise be discarded) for research. This occurs even without the patient's consent, if the "identifying information" is stripped from the "biospecimens." That is, what science currently sees as "identifying." Researchers are being given your blood and tissue to study, and it is highly likely they are documenting its source and more. Remember that it has not been that long that DNA was "identifying." And, there is no telling what we do not know today, that might nonetheless be "identifying" tomorrow. 

Should anyone be able to obtain and maintain information about your blood or tissue? May there come a day when telemedicine and diagnostic testing converge as ancestral research and DNA have? Will there come a day when a family member's voluntary disclosure of tissue or test results might change either the availability or cost of your medical care? Could scientists come to predict the probability or even severity of disease process so that an actuary could better isolate and assess the risks you present? 

For example, might a twenty-something in seemingly perfect health find her or his insurance access diminish or become more costly because the tissue of an octogenarian relative reveal probabilities of the existence of some malady or process that is costly? The waiver of privacy by some is implicating the lives of others. To what extent should (are) insurance companies be able to document and study what is known or suspected about our person based on diagnostic testing, diagnosis codes, or rendered treatment? 

Certainly, we are impressed by science identifying wrongdoers. Many will struggle to have even a modicum of concern for those who are responsible for atrocities, such as the Golden State Killer, the Night Stalker, and others. As certainly, we have clearly already acquiesced in serious invasions of our privacy whether by our Internet use or voluntary sharing of DNA for our own edification. But, there is a conflict between public good, personal curiosity, and privacy. It is topical and important. 

We must consider the topic in light of what we know, the way science and the world are today. However, we might be well advised to remain conscious that science is changing, the world is changing, and what seems innocuous today may be vastly more informative tomorrow. Will the benefits (Golden State Killer) of DNA databases lead us to begin registrations or collections (why is each child's footprint taken upon birth?) 

The fears expressed regarding tomorrow's use of our blood and tissue is conjecture, Dystopian, and fictional, yes. Some might even say paranoid. But, the path of recent science may be teaching that we have only just begun to understand what Dystopian means. And, if we have learned nothing else from disruptive technology (Uber, Facebook, Amazon) we have learned that government struggles to regulate apace innovation. Perhaps the time to consider our privacy is now.

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