I recently posted regarding patient privacy and data harvesting, see Big Data in Health Insurance (July 2018). I received some interesting feedback. One reader essentially cautioned me that there is perhaps no such thing as privacy anymore. There may be some truth to that. I also posted this summer on the use of DNA databases by law enforcement in Science, the Right to Privacy, and Big Brother (June 2017). Our world is certainly changing; some change is driven by technology and some we drive by our behavior.
In a July 30, 2018 post, the Louisiana Workers' Compensation Blog addressed concerns of the Louisiana Workers' Compensation Advisory Council (WCAC) regarding a third-party administrator (TPA) and its engagement of a laboratory to conduct pharmacogenetic testing. That post informs us that there is discussion and disagreement on this topic since 2017, that the WCAC lacked the quorum to take any "action," and that there is therefore continued WCAC debate. The post really does not help us to understand what pharmacogenetic testing is. My curiosity was piqued.
WorkCompCentral reported in 2016 that pharmacogenetic testing is touted as aiding in patient care. It reports that this testing was "a hot topic in workers’ comp." I am somewhat surprised and chagrined that two years later this is just now something about which I am conscious and curious. I suspect I read about comp as much as anyone, but this escaped me.
Pharmacogenetic testing is apparently similar to other genetic testing. A cheek is swabbed, and the patient's DNA is analyzed. The results are touted as providing physicians with information upon which to make treatment decisions. The process is said to seek to assess and predict how a particular patient will respond to "a variety of drugs, including those used to treat anxiety, depression, and substance abuse." The analysis points out that we are each individuals, with unique attributes that are predicted and defined by our own genetic code.
Therefore, as individuals, we may each "metabolize a drug" somewhat differently than someone else may. The potentials are "the drug has the desired effect, little to no effect, or causes an adverse reaction." Reportedly, "pharmacogenetic testing can provide a physician with information upfront" regarding a particular result or reaction in a particular patient. The purported goals for this are "eliminating guesswork, reducing drug spending, and providing better treatment."
However, the patient testing practice was questioned in 2016 in Washington state. There were concerns about whether the testing is efficacious, and "whether physicians change their prescribing in response to the results of pharmacogenetic testing?" But, it seems from all this reporting that adapting prescribing for a patient is the whole purpose of testing?
WorkCompCentral cited a report by Optum, which expressed recognition of the benefits of this testing in certain settings. Optum cites potential benefits when "choosing drugs to treat cancer or heart disease." However, there was less enthusiasm from Optum regarding workers' compensation. The conclusion is that this testing is "not generally recommended in workers’ compensation.” In that regard, Optum's report does not conclude that such testing is not efficacious but expresses doubt that there has been a demonstrable benefit sufficient to justify the related expense of this testing, which might be up to $1,000.
WorkCompCentral (WCC) reported in 2016 that perspectives on this testing were varied; it has both proponents and critics. The issue resurfaced in WCC last November: Laboratory to Be Told to Cease Requests for Genetic Testing of Injured Workers. This story focused upon Louisiana, and a decision by the WCAC "to send a cease-and-desist notice to" Insight Labs. The WCAC instructed the lab to stop "conducting genetic testing on behalf of workers’ comp third-party administrator Broadspire." The action by the WCAC was reportedly not a decision about the test's efficacy, but about concerns of patient consent; it was concerned "doctors and injured workers might believe they’re required to comply" when a laboratory requests such testing.
As an aside, it is curious to me that an "Advisory Council" would have the authority to tell a market participant to stop doing something, The term "Advisory" seems suggestive of a role that is neither regulatory or legal. The Workforce Commission provides meeting minutes regarding the Council on its website. According to the published bylaws of the Council, its purpose is
"to review and make recommendations to the governor, through the Louisiana Workforce Commission, on any proposed legislation and rules, affecting the administration or resolution of claims provided for in the Workers' Compensation Act."
There is no specific reference in the Council bylaws to the WCAC having authority to direct market participants or to issue cease and desist instructions (it is not the police, not a regulator, and not a court). The focus of the Council described in the bylaws is specifically and seemingly only upon legislation advice.
However, the November WCC story says that the Council voted to prohibit Insight Labs from corresponding with injured workers to request this DNA testing. A representative of The Workforce Commission explained this is appropriate because while the Insight letter "appears to grant discretion to the (health care provider) and his patient" as to whether to test, some physicians have reported "they feel coerced to perform the test." There is apparently a perception that failure to perform the testing could affect payments to the doctor for services "and/or future indemnity payments to the (injured worker).”
Then the Louisiana Comp Blog reported on July 30 this year that WCAC discussion continues over the testing and that the specific focus remains Broadspire and Insight Labs. It noted that the Council again expressed concerns about “adjusters who might use the information to sidestep the Medical Treatment Guidelines,” and questioned "who determines the criteria that makes a particular injured worker a candidate for the testing." There is seemingly no suggestion in any of the Louisiana news coverage that there is pending legislation or even proposed legislation upon which any Council recommendation, "advice," or action might be focused.
The fact is that DNA has become increasingly ubiquitous in society. See Science, the Right to Privacy and Big Brother (June 2018). DNA is being increasingly engaged by the government in investigating crimes. Familial DNA from voluntary databases is being used to solve decades-old crimes. Familial, in that the accused has not submitted DNA, but some relative has done so. That family member, in search of edification about their roots and history, has voluntarily provided information that in effect invades the privacy of a relative perhaps.
Similarly, millions of people are voluntarily submitting information to Facebook and similar applications. They describe what they like, where they go, what they eat, who they follow, and what they spend money on. That data is, similarly to the DNA submitted, voluntarily provided, by us or our friends or relatives. We have recently learned that such information, voluntarily submitted to Facebook and similar, is sold to people who wish to influence us with news or advertising.
Clearly, we may each decide to give up our rights to privacy. We may Snapchat a picture of every meal we consume if the inspiration takes us. But, when we submit our DNA, we have seen that we waive individual privacy and perhaps that of our relatives. In conjunction with the implications of Big Data in Health Insurance (July 2018), what service are we thereby providing to others (or a disservice to ourselves and our relatives)? There is a fear that insurance companies might make coverage or pricing decisions based on their perceptions of our personal risk. And now concerns that some may feel coerced to participate or at least may participate without full understanding.
Our DNA might reveal things to others that we do not know or recognize ourselves. Some "risk factors" in my DNA might lead an insurance company to decline me coverage. It might lead some decision-makers to deny authorization for some procedure, modality, or test. It might lead some doctors to conclusions or predictions about my care or future. And, it is entirely possible that my DNA could lead to conclusions about my relatives instead.
We are in the midst of a rapidly evolving age of information. There are vast and amazing potentials that this information and technology can work to our benefit. However, there also appear to be a multitude of potential risks to our health, welfare, and privacy. In that regard, it seems prudent that anyone be somewhat protective of their personal information. It is up to the individual to protect privacy in the first instance. It is perhaps prudent that patients are fully informed of the potential implications of medical care, and that should likely include the risks and privacy concerns of DNA testing. Personally, I am concerned about DNA testing, databases, and privacy?
That all said, I remain dubious that an Advisory Council may undertake the role of police officer or regulator. Certainly, a regulation or statute might address such concerns. However, it may also be that such regulatory authority cannot be delegated to an advisory group that possesses, by its own bylaws and definitions, only specific authority and power. An appropriate question may be "Do I agree with the Council"; but for others, the more critical question may be "Can the Council legally take action?" And that may be for some court to sort out one day; litigation is unfortunately not an uncommon occurrence in the world of workers' compensation.
