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GINA Law Prohibits Employers from Using Genetic Information But Wellness Programs With Financial Incentives Are OK For Access?

Posted Nov 17 2010 3:21pm

We have Wellness programs coming out our ears today and they are not a bad thing but one questions the angles of how this is occurring and data access.  With the use of biometric monitoring with devices that report data, we may have some gray areas up for discussion?  If an employer offers a Wellness program that an employee can volunteer for, how does the employer and the Wellness program use that data, as we all know today by reading the news, there’s money in your health data and privacy issues get a bit gray. 

So if you are applying for a job, you are protected, but what if you join the Wellness program and what if it collects data from a biometric device?  Many of these biometric companies have disclosures that are fine print and allude to the fact that they work with 3rd parties and could sell data?  Well who are these 3rd parties as there are many out there available to work with for sure and new ones pop up all the time.  Some offer a disclosure that they use anonymized data only but do they really?  If a device reports data then they have it all and it all depends on the algorithms they use for reports.  Yup, we are back to those algorithms once again. We have below the first court challenge on the GINA law and not too long ago Blue Cross was accused of running the “breast cancer algorithm” too, which may or may not relate to a genetic test being taken.  I am not saying anyone is doing it or not but just making the statement that the availability and data functions are there to do it if one desired.

As a matter of fact, some insurance companies own Wellness programs too, so do they share data?  It is certainly available to do so, and do they do it?  We don’t really know as those algorithms and mathematical processes run behind the scenes and of late what we hear and what we see sometimes is not always the same.  Just as a demonstration of how risk management algorithms work, below is the story about an unborn baby and as soon as the child was born, new algorithms were run and they didn’t want to pay the bill.  Sounds awful indeed, but the insurance business is notorious for not attaching real people to their formulas and make decisions that are not human like.  Many employees will not ask questions either as they know bringing up questions from what is shown on the screen brings attention to their job and performance and many are on programs to meet goals and are reviewed according to their job descriptions or have bonuses on pay for performance. 

So at times we come to ask the question do they really want me to be well or is this a way of getting some data to sell, or is it both and which is the priority?  Certainly we can have a win-win if all play by the rules, but it doesn’t always happen that way. To go even a step further here, behavior predictions enter the picture here too so will they eventually be predicting your behavior and will some of your genetic information as shown through a wellness program be analyzed?  Remember you may have signed that privacy away with participation.  These folks below are the experts of gathering and selling data, a company that sells behavioral algorithms to insurance companies and Red Brick uses the algorithms created by Ingenix, a subsidiary of United Healthcare, so they seem to wrap around each other at some point. 

We seem to have lost some wisdom here in healthcare due to the eternal search for the perfect costing algorithms at times.  The software mentioned above learns your behavior patterns so thus combining with genetic information, what kind of a predictive mold do they ascertain about you one might ask?  As analytics keep moving in this direction is also crosses the lines with “scoring” individuals too for coverage. 

Excessive Incentives and Rules – Where Did the Wisdom Go in HealthCare?

Until we get some algorithmic centric laws in place, it’s a big mess and it doesn’t help to have a Congress that is for the large part “non participants” in technology and so many sit in denial.  I wrote the post at the link below back in August of 2009 and we are still at the same crossroad with those that don’t get it. 

In the meantime, it seems to be that GINA too has been watered down and there’s a ton of loopholes with Wellness programs that can get and analyze or even sell your data from the employer side and time will give us some ideas as we see new marketing in those areas appear, perhaps disguised so the average consumer doesn’t understand it, but that is nothing new as those processes have been going on for a long time and we read about them usually in the form of a new OMG story that hits the news today.  If offered a wellness program, just read all the fine print as best you can and ask questions and more questions about the privacy end of things as again you may be giving up a lot and may not realize it.  The data is there to be queried and available and will it be done if there’s a dollar to be made we might ask?   I used to write code and have done hundreds of queries for creating software so if the data is there will they query it for dollars, probably, as that’s the main flux of all this today.  BD 

Employers can now add genetic information to the list of things – like race, gender, age and disability – they cannot consider when making hiring and firing decisions or any other employment decisions. The Equal Employment Opportunity Commission published its final regulations implementing Title II of the Genetic Information Nondiscrimination Act (GINA) on Nov. 9.

According to Workforce Management, Title II of the GINA "prohibits using genetic information in making employment decisions, restricts acquisition of genetic information by employers and strictly limits its disclosure." Broadly, genetic information includes information about a prospective hire's genetic tests and "the manifestation of a disease or disorder" in that person or in his or her family members.

The one bright spot for employers in the final regulations? They may use genetic information "in connection with voluntary wellness programs" even when those voluntary programs include a financial incentive.

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