Several years ago, I learned that I carry an abnormal variation of the BRCA1 gene, which is responsible for most hereditary breast cancers. I confided in several of my coworkers at the time. I've since decided that I'm going to try to have children, so I've postponed surgical options to lower my risk but have frequent medical appointments to make sure I'm healthy. My problem is my manager: One of my coworkers told her about my condition (they're friends), and now that Angelina Jolie has announced she also carries this mutation, my manager will not shut up about it. I feel really upset that my privacy is being violated, but I'm also concerned that the company now knows I will need several surgeries and have a high risk of cancer, which makes me a real liability. Is there anything I can do about this?
The water cooler effect can be painful, as you're learning now. What felt to you like confiding a secret in a few close friends has apparently become fodder for workplace gossip. The good news is that the law protects you from employer discrimination based on your condition. The bad news is that there's not much the law can do to put this particular cat back in the bag.
The Genetic Information Nondiscrimination Act (GINA) prohibits employers from acquiring or requiring employees to provide genetic information. It also prohibits employers from using genetic information they acquire legally in making employment decisions. In other words, your employer may not discriminate against you at work because of your BRCA1 mutation, nor may your employer take it into account in any way in making decisions. Essentially, even though your manager knows about your condition, the company may not act on that information.
GINA also requires employers to keep genetic information confidential. (Apparently, your manager didn't get this part of the memo.) The law recognizes that employers may acquire genetic information either inadvertently or in the course of doing other things (like requiring doctor's notes for prolonged absence due to illness or providing genetic screening as part of a wellness program).
There's an exception to the general ban on acquiring information for accidental disclosures, such as yours: If an employer learns genetic information through casual workplace conversation, overheard comments, information volunteered by employees, unsolicited email messages (for example, a fundraising appeal for those suffering from a particular genetic disease), or other inadvertent means, that fact doesn't violate the law. So, your coworker's decision to tell your manager about your condition is not illegal.
However, even if a company acquires information in this way, it still has a duty to keep it confidential. This duty applies to managers, who are authorized to act on the company's behalf. So, once your manager learned about your condition, she should have kept that information to herself. In fact, she had a legal duty to zip it.
GINA is a relatively new law, and there are plenty of employers that aren't well versed on what it requires. The best thing to do right now is to go straight to your manager and let her know you want her to stop talking about you. Explain that you want this information kept private, and inform her that she is legally obligated to protect its confidentiality. You can refer her to the EEOC's website for information about what GINA requires.
You may also want to go to your HR department and tell them that you want them to honor your rights under GINA to keep this information confidential. If you're not sure how far your secret has spread, you may be reluctant to be the one to spread it further by telling HR. On the other hand, this will put your company on notice that it is duty-bound to maintain confidentiality and to not consider this information in making decisions. Chances are good that this will convince the company to step in and protect your rights. If worse comes to worst and the company discriminates against you based on this information anyway, at least you will have a much stronger legal claim once you put the company on notice.
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