For young women at high risk for breast and ovarian cancer, choosing whether to share your high-risk status with your employers and co-workers and planning for potential absences from work can be challenging. Learn about your options and rights so you can make the decision that's best for you.
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Remember, under the law, you are not required to share your high-risk status with your employer.
For many career-focused women, the 20’s and 30’s are critical years for climbing the ladder, earning the respect of bosses and peers, and planning for the future. For young women at high risk of breast or ovarian cancer, missing work for additional screenings, doctor’s appointments, or surgery can be difficult to juggle. Additionally, choosing whether to share your high-risk status with your employers and co-workers and planning for potential absences from work can be particularly challenging.
Like all decisions related to your breast and ovarian health, how much you choose to share with your employer and co-workers and how you plan to manage your workload through potential absences are personal decisions with many possible ramifications. The only right answer is the one that works for you.
It is important to remember that under the law you are not required to share your high-risk status with your employer, and your employer is not allowed to ask or gather information about your genetic information, such as family history or genetic test results. However, after weighing the pros and cons as well as the potential long- and short-term consequences, you may feel that telling your employer is the right thing to do. If that is the case, here are some things to think about.
Genetic discrimination occurs when an insurance company or employer treats an individual differently based on her genetic information. The Genetic Information Nondiscrimination Act (GINA), passed in 2008, makes genetic discrimination illegal in health insurance and employment.
One of the important protections that GINA provides is that an employer cannot request, require, or purchase an individual’s genetic information unless the request falls under one of several limited exceptions under the law. Therefore, GINA not only bans an employer from discriminating based on genetic information, but stops an employer from gaining access to the information at all without your consent.
These protections are very important to keep in mind when deciding whether to disclose genetic information to an employer for three reasons:
1) Your employer cannot ask about genetic information, except in very limited circumstances; so if you choose not to disclose your medical status, this information is protected.
2) If employers do get genetic information through one of the exceptions, GINA requires them to protect your privacy by keeping two separate files for you: a medical file and a general human resources file.
3) GINA’s strict rules about an employer getting genetic information may mean some employers may actually be uncomfortable with your telling them your genetic information.
You may wish to tell your employer about your genetic status in order to get support at work. However, due to the constraints of the law, your employer may not be able to reach out to you with questions and concerns like they could in an environment that is not regulated. The law in this area is new, and it remains to be seen how many of the provisions will work in practice. Therefore, some employers may be more cautious than others in order to avoid violating the law.
For more information about genetics and the law, visit our Legal Resources page.Collapse [ - ]
The Americans with Disabilities Act (ADA), was intended to eliminate discrimination against people with disabilities in the workplace. It applies to private employers with 15 or more employees. To use the ADA’s protections, you must be a qualified individual (i.e. you have to be qualified for the job and able to perform the essential job functions), and you must have a disability. Under the ADA, the definition of a disability is a physical or mental impairment that substantially limits a major life activity. It is somewhat unclear whether an individual with an asymptomatic genetic predisposition would be protected under the ADA. The law may apply if an individual has a disability due to a diagnosis or due to treatment, including the effects of preventative treatments.
According to the ADA, major life activities include walking, talking, breathing, eating, etc. In 2008, the ADA Amendments Act was passed and expanded major life activities to include activities that “most people in the general population can perform with little or no difficulty,” including sleeping, concentrating, thinking, communicating, and the operation of major bodily functions.
If you are found to have a disability under the ADA, there are three ways you can be protected against discrimination:
1) You currently have an impairment that substantially limits a major life activity. For example, you have opted to undergo prophylactic surgery and are now suffering from lymphedema, making it difficult to perform your job duties as you did before. If you are in a situation where you currently have an impairment, you may be entitled to reasonable job accommodations. Reasonable accommodations can be different for everyone and can depend on a number of things, such as your needs, your workplace environment, and your job responsibilities.
The trick is that the accommodation must be reasonable, which means that it can’t be an undue hardship for your employer to provide you with the job modification. For more information on job accommodations visit the Job Accommodation Network.
In order to request a reasonable accommodation, you must disclose that you have a medical condition; however, you do not have to state the exact diagnosis or prognosis. Your employer does have the right to request medical documentation showing that either a) you need the accommodation, or b) that you have the present ability to perform the job safely.
2) You have a history of an impairment. For example, you are a childhood cancer survivor, and although you are cancer free and can perform your job without a problem, you are being treated differently because of your history with cancer.
3) You are being “regarded as” having an impairment. For example, you choose to disclose your high-risk status, and even though nothing has changed in your ability to do your job, your employer beginsto treat you differently because s/he regards you as having a disability and believes you are unable to perform the essential functions of your job.
It is important to note that although the ADA protects you from this type of discrimination, you are not entitled to reasonable accommodations if you fall under the “history” or “regarded as” prongs of the ADA.
If you believe that you are being discriminated against at work because of your high-risk status, you can contact the Equal Employment Opportunity Commission or the Cancer Legal Resource Center for assistance.
Many states have their own fair employment laws that provide employees with protections similar to the ADA. These laws vary from state to state, and some even provide coverage for employers with fewer than 15 employees. For more information about the laws in your state contact the CLRC or your state’s fair employment agency.
The Family and Medical Leave Act (FMLA) is a federal law that provides you the right to take time off work and protects your job during this time. If you are eligible, under the FMLA you can take up to 12 work weeks of unpaid, but job protected and health insurance benefit protected leave, per year, to care for yourself OR to care for a seriously ill spouse, parent, or child. If you are taking time off for your own serious health condition, you must be unable to perform your job. A serious health condition is defined as “an illness, injury, impairment, or physical or mental condition that involves inpatient care in a hospital, hospice, or residential medical care facility; or continuing treatment by a health care provider”. Therefore, you will most likely not be able to use FMLA leave to go to annual preventative screenings because an asymptomatic genetic predisposition for cancer would not be considered a serious health condition under the FMLA. However, a risk-reducing surgery and recovery time may fall under these protections. This leave can be used all at once or in smaller increments of time up to twelve weeks per year.
In order for you to be eligible for FMLA leave:
During your time off your job is protected, so when you return to work, your employer must give you back your position, or an equivalent position that is substantially equal in pay, benefits, and responsibility. In other words, you cannot be demoted when you return to work.
Your health benefits are also protected during FMLA leave. Therefore, if your employer normally pays for part or all of your health insurance coverage, then your employer has to keep paying for those benefits for up to 12 weeks even if you’re not working. Furthermore, employers are required to reinstate your other benefits (Ex. life insurance, retirement contributions, etc.) when you return from leave, although they do not have to pay those other benefits during your leave.
One common question is: If these 12 weeks of leave are unpaid, how will I pay my bills? This is where disability insurance can be useful. Disability insurance is a type of insurance that pays a percentage (typically 50-70%) of your income in the event that you cannot work due to a disability. There are different types of disability benefits, including state, federal, and private benefits.
If you have looked at our Legal Resources page you know about the protections GINA provides young women who are high-risk. However, GINA’s insurance regulations only apply to health insurance companies, not to life, long-term care, and disability insurance companies. These types of insurance are regulated at the state level. In some states, disability insurance companies can refuse to sell you a policy based on a pre-existing condition or even your high-risk status, although some states regulate or ban the use of genetic information by disability insurance companies. Getting disability insurance may be something you consider before you even learn of your high-risk status.Collapse [ - ]
If you feel discriminated against, you may have legal recourse and should take action sooner rather than later:
Among your options:
Some might consider it essential to disclose their high-risk status because they hold managerial positions or run their own business. Others consider that a reason not to tell; privacy and protection may be of the utmost concern. In either circumstance, your employer, co-workers, and/or employees all depend on you to be there. They rely on the contributions you make over time and the energy and passion you bring to the team. Your work is essential to overall productivity.
Remember, you are not legally required to tell anyone of your high-risk status, even if you are directly asked. It’s also important to note that, although GINA prohibits employers from discriminating against individuals, there is no guarantee that an employer isn’t going to discriminate. Keep in mind that there are many employers that will not use the information for malicious purposes and will be supportive when the information is disclosed.
If you do decide to tell someone, the next question is who to tell. The answer depends on you and your experience in your workplace. First, determine who really needs to know, and start by talking to those people who make you feel most comfortable. If you’re completely in doubt, you may consider starting with Human Resources and letting their experience help guide and support you through the “telling” process.
You’re going to need to make an assessment of your company’s corporate culture and how you fit into the scheme of things. Ask yourself the following:
Analyzing these questions will help you predict how your news will be received and help you decide who to tell—and how. You know your work environment better than anyone.
If you own your own business, you have the equally difficult decision of whether to tell your employees. Your decision may be complicated since it’s not just a personal one—it’s an issue that affects the morale and well-being of your company.
Even if you’d like to avoid worrying your employees, take a look at the corporate culture you’ve worked so hard to create and how your health management plan will fit into it—especially how your absences or changes in schedule may affect your employees.
In many cases, you probably have a close enough relationship with your employees to bring them together and share the news. They’ll appreciate your frankness as an expression of trust, and they’ll be grateful to know what to expect and how it will affect the company.
In addition to determining who to tell, it’s important to give some serious thought to what, and how much, the people you work with need to know about your high-risk status.
If you want to keep the information you share to a minimum, you may want to consider disclosing the following:
If and when you do decide to share this information, it’s best to create a game plan for how you are going to handle your workload while managing your health. Presenting a plan at the same time you deliver your news reminds colleagues and supervisors of your commitment to your job and your company. Not only are you reinforcing your position as a proactive and solutions-oriented member of the team, but you are also saying, “Don’t worry. I will still be here. I will manage my breast and ovarian health and my job won’t suffer.” The following are helpful tips for developing your plan:
If your co-workers and supervisors are friends, you may want to share with them what’s happening and how you feel about it. Once people know how you feel, they may have a better sense of how they should feel. Consider sharing the following:
If you have decided that it is in your best interest to disclose your high-risk status, you’ve decided whom to tell, and you think you know what to tell, what comes next can sometimes be considered the most difficult part.
Many people don’t understand what it means to be at high risk for breast and ovarian cancer. They may think you are telling them that you have been diagnosed with cancer. On the other hand, they may not understand why, if you are not sick, you are sharing this information with them. Try to help them understand the difference between high-risk status and a diagnosis of cancer while also stressing the importance of proactively managing your increased risk.
Recognize that it’s perfectly understandable to be nervous. This is personal information and can be hard to share. Prepare yourself for a wide range of responses. Remember that your own reactions to learning your high-risk status were varied, and if you didn’t know how to react, chances are the people around you won’t know either. Many will need a little time to get used to the idea. Acknowledging possible responses can help make facing those moments easier. Try making a list of possible reactions—both those you’d like to avoid and those you’d most like to see. Some examples include:
Some women opt to tell their immediate family, friends, and loved ones first—which is plenty to handle. If this is the course you take, give yourself time to answer their questions and process the experience before you share the news at work.
In most cases, the best time to tell is after you and your doctor have discussed and developed a personalized strategy for you to manage your breast and ovarian health. At that point, you’ll know how, if at all, your high-risk status will affect your job. Then you can decide whether to tell people in advance or only as it becomes necessary.Collapse [ - ]
Regular communication will help prevent your co-workers and supervisors from questioning your value and productivity as a staff member. If you do disclose your high-risk status, co-workers may need reassurance that you’re still part of the team. A lack of communication can result in confusion and anxiety—or even mistrust and suspicion—whereas clear and constant communication can offer a world of comfort.
To make the transition easier, you can help your company stay productive in your absence by:
Naming a point person can help you manage your interactions once you’re on medical leave. You and your point person can decide how often he or she will call you with questions and updates and when it is (and isn’t) okay to contact you with an office-related “emergency.” He or she can also keep your co-workers informed about your progress when you’re out of the office and let you know what you’ve missed.
When selecting a point person, consider the following:
In your absence, the paperwork will still flow, and the mail will still arrive. Here’s how to manage it:
For high-risk young women who undergo prophylactic surgeries, returning to work often brings mixed emotions: relief, trepidation, hope, and sometimes awkwardness. Even if you are sure you’re ready to return, you may worry about whether you’ll encounter skepticism or support. That depends partly on how you approach the situation, experts say. Here are some suggestions for smoothing the transition from patient back to valued employee.
How much you divulge can also depend on the work environment and whether other employees have taken time off for health related issues and returned to work successfully. If you’re naturally talkative and share information easily, you’ll probably want to update co-workers and your boss on your recovery. If you’re more private, just tell everyone you’re doing fine and let it go at that. If you have had complications from surgery and have asked for a reasonable accommodation under the ADA, your supervisor is required to keep that request confidential.
It is important to feel confident again about your job abilities.
Just as important as feeling capable of doing the job is feeling psychologically up to speed. If you’re feeling below par, you might seek one-on-one counseling from a social worker or a therapist, or join a support group of other high-risk young women returning to work.
Are you ready to come back full-time or part-time? If part-time sounds more feasible, consider what accommodations you will need. Do mornings work better, or afternoons? Take into account any medications you are on and their possible side effects. Will they impair your ability to drive to work, for instance, or to stay alert during marathon meetings?
Once you’ve decided whether you are fit to return full-time or part-time, see if it fits your employer’s need and then prepare to follow it.
The practical advice provided here was excerpted from Cancer and Careers. For more information on managing your career, visit Cancer and Careers, and for specific legal or insurance questions, contact the CLRC.Collapse [ - ]