What you need to know about GINA
September 9, 2008 by Bill MeltzerPosted in: Disability, In this week's e-newsletter, Latest News & Views, Wellness
There’s been a lot made of the feds’ recent ban on mandatory genetic testing of employees. But few companies do it even on a voluntary basis. So why all the fuss?
Genetic tests are rapidly becoming more comprehensive and less expensive. In fact, experts predict that the tests will become commonplace within the next decade.
The federal Genetic Information Nondiscrimination Act (GINA) is a pre-emptive strike against misuse of the tests by employers. GINA makes it illegal for employers to base hiring, firing or benefits eligibility decisions (e.g., setting someone’s premium shares) on the results of the tests.
How could GINA apply to the average employer in the short term? Two common situations:
- inadvertent receipt of genetic information from healthcare providers, and/or
- self-insurance decisions.
Example: After a conditional offer of employment, you may require an applicant to submit to a medical examination and sign an authorization for the release of their health records. These health records almost invariably include information barred from disclosure by GINA.
Now, let’s say things don’t work out with the employee, and he or she is either not offered the position or terminates shortly after hire.
He or she could take you to court, claiming discrimination based on the family medical history information you keep in your file cabinet.
Helpful uses
Currently, there are tests for about 50 different genetic disorders. Most point to the risk of developing cancer or other illnesses from workplace exposure to certain chemicals or other agents.
The current tests are useful only to employers in certain industries.
But thanks to the federally funded Human Genome Project, a much more comprehensive array of tests will be available in the near future. The new tests can detect the sorts of genetic risks that drive many firm’s health plan costs, including risks of heart disease, certain types of cancer, juvenile diabetes, asthma bipolar disorder and even migraine headaches.
In the near future, voluntary testing will help employers target wellness programs to their workers at risk of developing illnesses that aren’t always related to diet, exercise or smoking.
Ultimately, the voluntary genetic tests should more than pay for themselves – as long as your company stays within the fuzzy boundaries of GINA.
September 11th, 2008 at 3:54 pm
Personally, I think the ban is a good thing. While I understand the employer’s desire to contain health care expenses and sympathize with this, I believe this kind of information does have a very large chance of being misused.
I’ve known people who have delayed medical care for major illnesses that could eventually kill them if not treated because they were afraid, once it was in their medical file, they would not have certain employment opportunities in the future. Some of those diseases were medical and some were mental health related. I have a friend who has had a heart transplant and cancer. He is completely unable to get a job, but he also isn’t eligible for disability insurance because he’s able to work. I know a person with diabetes who would not have been hired if the company knew about his medical condition in advance.
We can talk about how illegal this kind of discrimination is all day long – and it is, which is the way it should be – but the reality is, employers discriminate against people with disabilities or who have medical conditions or who have mental health challenges and they do it every day. I have personally fought with presidents of companies in an attempt to prevent this kind of discrimination and it never ceases to appall me how so many don’t care what is wrong or right. I can’t count the times I have explained to managers that they can’t refuse to hire a person because they are of child-bearing age or because they divulged they are a cancer survivor or because they had a brain tumor removed several years ago. Giving employers legal access to information regarding genetic predisposition only makes the issue worse, at least to my way of thinking. I don’t think anyone should be discriminated against for any reason and this one has the potential to be a mine field in the future. I’m glad it’s being addressed.
September 12th, 2008 at 8:47 am
So, in the end, what does this law change?
September 12th, 2008 at 9:15 am
The article claims voluntary testing will help employers target wellness programs but it is becoming more commonplace for workers to be penalized, ie higher healthcare costs or even loss of employment because of an employers greater knowledge into an employees personal life.
September 18th, 2008 at 2:54 pm
That is the most ridiculous thing I have ever heard of! How is this kind of testing supposed to prevent discrimination? It doesn’t! It promotes it! It isn’t your employers business to know that much about you. Can you do the job or not should be all that matters! You, your doctor, and your family should be the only parties who know of anything like that about you! Even if you take the company to court for discrimination, how are you going to prove it! They could give a number of reasons that they didn’t hire you.
I would never volunteer for such an invasion of my privacy!
October 31st, 2008 at 11:06 am
I can see it going either way. Prevention requires testing of some form for anything. The only way to make it better is to try it and tweak it for the better as you progress. The only thing is no matter what, you have a double-sided sword. There will be employees that figure out how to abuse the situation and there will be employers that do not use the information for the purpose it was meant to be used. People are stuggling now to find and keep jobs. This is life. No matter what the economy, there will be people struggling to survive. So, I do believe that this information should not be public info and that the employers should still not be able to ask questions that could lead them down the wrong path or it be easy to dispose of people from the work place with medical problems, including “old age”, unless it becomes harmful to them or other individuals.
January 8th, 2009 at 4:19 pm
I am very glad this law was passed. I am not concerned about employment discrimination, I am concerned about losing my ability to obtain health insurance.
It turns out that my family has a rare form of inherited cancer that raises our risk of cancer to 80-100% I really had to think hard before I agreed to be tested. The only reason I agreed is that I am eligible for lifetime medical coverage from my employer. I know that if I test positive, I’ll never be able to buy life or disability coverage again, as the law doesn’t cover this.