PGxCheck...What is our DNA saying?

 

 

 

We need to consider how genetic information

can help us with respect to healthcare. We are able to perform genetic testing more readily,

but how are we using the results? Join in the discussion!

Welcome

Personalized medicine and pharmacogenomics (the influence of genetics on drugs) is here. It is in its infancy and we all will watch it grow. From healthcare professionals to the general public, pharmacogenomics and the broader area of personalized medicine will present a learning curve.


This blog is made possible through an individual making their genetic information available. 

As we learn what this individual's genetics are telling us...and what it is not telling us, we will discuss it. I am sure there will be many questions. We will have individuals from pharmacy, genetics, ethics, law, and other disciplines adding their expertise and thoughts to the discussion. I sincerely hope you will contemplate the information, formulate your thoughts, and participate in the discussion!

Genetic Discrimination - An example and the law

There have been a number of comments related to legal issues and genetic information, as well as one post referring to the Genetic Information Nondiscrimination Act (GINA). Consider the information from the U.S. Equal Employment Opportunities Commission (EEOC) explaining the 2008 legislation, found at http://www.eeoc.gov/laws/types/genetic.cfm and accessed September 23, 2013.


Genetic Information Discrimination

Title II of the Genetic Information Nondiscrimination Act of 2008 (GINA), which prohibits genetic information discrimination in employment, took effect on November 21, 2009.

Under Title II of GINA, it is illegal to discriminate against employees or applicants because of genetic information. Title II of GINA prohibits the use of genetic information in making employment decisions, restricts employers and other entities covered by Title II (employment agencies, labor organizations and joint labor-management training and apprenticeship programs - referred to as "covered entities") from requesting, requiring or purchasing genetic information, and strictly limits the disclosure of genetic information.

The EEOC enforces Title II of GINA (dealing with genetic discrimination in employment). The Departments of Labor, Health and Human Services and the Treasury have responsibility for issuing regulations for Title I of GINA, which addresses the use of genetic information in health insurance.

Definition of “Genetic Information”

Genetic information includes information about an individual’s genetic tests and the genetic tests of an individual’s family members, as well as information about the manifestation of a disease or disorder in an individual’s family members (i.e. family medical history). Family medical history is included in the definition of genetic information because it is often used to determine whether someone has an increased risk of getting a disease, disorder, or condition in the future. Genetic information also includes an individual's request for, or receipt of, genetic services, or the participation in clinical research that includes genetic services by the individual or a family member of the individual, and the genetic information of a fetus carried by an individual or by a pregnant woman who is a family member of the individual and the genetic information of any embryo legally held by the individual or family member using an assisted reproductive technology.

Discrimination Because of Genetic Information

The law forbids discrimination on the basis of genetic information when it comes to any aspect of employment, including hiring, firing, pay, job assignments, promotions, layoffs, training, fringe benefits, or any other term or condition of employment. An employer may never use genetic information to make an employment decision because genetic information is not relevant to an individual's current ability to work.

Harassment Because of Genetic Information

Under GINA, it is also illegal to harass a person because of his or her genetic information. Harassment can include, for example, making offensive or derogatory remarks about an applicant or employee’s genetic information, or about the genetic information of a relative of the applicant or employee. Although the law doesn't prohibit simple teasing, offhand comments, or isolated incidents that are not very serious, harassment is illegal when it is so severe or pervasive that it creates a hostile or offensive work environment or when it results in an adverse employment decision (such as the victim being fired or demoted). The harasser can be the victim's supervisor, a supervisor in another area of the workplace, a co-worker, or someone who is not an employee, such as a client or customer.

Retaliation

Under GINA, it is illegal to fire, demote, harass, or otherwise “retaliate” against an applicant or employee for filing a charge of discrimination, participating in a discrimination proceeding (such as a discrimination investigation or lawsuit), or otherwise opposing discrimination.

Rules Against Acquiring Genetic Information

It will usually be unlawful for a covered entity to get genetic information. There are six narrow exceptions to this prohibition:

  • Inadvertent acquisitions of genetic information do not violate GINA, such as in situations where a manager or supervisor overhears someone talking about a family member’s illness.
  • Genetic information (such as family medical history) may be obtained as part of health or genetic services, including wellness programs, offered by the employer on a voluntary basis, if certain specific requirements are met.
  • Family medical history may be acquired as part of the certification process for FMLA leave (or leave under similar state or local laws or pursuant to an employer policy), where an employee is asking for leave to care for a family member with a serious health condition.
  • Genetic information may be acquired through commercially and publicly available documents like newspapers, as long as the employer is not searching those sources with the intent of finding genetic information or accessing sources from which they are likely to acquire genetic information (such as websites and on-line discussion groups that focus on issues such as genetic testing of individuals and genetic discrimination).
  • Genetic information may be acquired through a genetic monitoring program that monitors the biological effects of toxic substances in the workplace where the monitoring is required by law or, under carefully defined conditions, where the program is voluntary.
  • Acquisition of genetic information of employees by employers who engage in DNA testing for law enforcement purposes as a forensic lab or for purposes of human remains identification is permitted, but the genetic information may only be used for analysis of DNA markers for quality control to detect sample contamination.

Confidentiality of Genetic Information

It is also unlawful for a covered entity to disclose genetic information about applicants, employees or members. Covered entities must keep genetic information confidential and in a separate medical file. (Genetic information may be kept in the same file as other medical information in compliance with the Americans with Disabilities Act.) There are limited exceptions to this non-disclosure rule, such as exceptions that provide for the disclosure of relevant genetic information to government officials investigating compliance with Title II of GINA and for disclosures made pursuant to a court order.


Relative to GINA, consider the following case of the Burlington Northern & Santa Fe Railway company (click here). Note that this case occurred prior to the GINA. Let's continue to share our thoughts! 

10 comments | Add a New Comment
1. Jasmine Hossler | September 23, 2013 at 12:23 PM EDT

How could people discriminate against a coworker when it comes to genetic information? I get how employers could be discriminative but not the coworkers part of the GINA act.

2. Kara Horvath | September 23, 2013 at 01:44 PM EDT

I think this discussion about GINA is very appropriate right now. On Friday, the P1 students got HIPAA trained. The confidentiality component of GINA helps reinforce the HIPAA legislation and takes it a step further by addressing the working environment. Discussing GINA helped me to better understand the importance of patient/genetic confidentiality and how these laws can be violated.

3. Kendra Catalano | September 23, 2013 at 04:14 PM EDT

I think that having legislation that protects an individual in the work force is definitely a good thing. If my genetic information was out there, I would be worried that I would have a harder time getting and maintaining a job. As Kara mentioned above, this definitely fits into the HIPPA lecture that we received on Friday. GINA reinforces the HIPPA legislation and helps maintain patient confidentiality.

4. DFK | September 23, 2013 at 05:59 PM EDT

Jasmine: How could people discriminate against a coworker when it comes to genetic information? I get how employers could be discriminative but not the coworkers part of the GINA act. Response: I believe any of the \harassers\ would have the genetic information, regardless of how they obtained it. Not sure how a co-worker would get it though. Maybe I am missing something here too. Any thoughts?

5. Brady Giles | September 23, 2013 at 11:05 PM EDT

GINA is even more important now that pharmacogenomics is starting to more fully develop as a science. If an employer gained ahold of an employee's genetic information and knew what medications they were taking from looking at their medical records then the results could be disastrous for the employee. The employer might not have known what individual medications were for, but with the employee's genetic information they could figure it out. I'm glad that we have GINA established now instead of waiting until the first big lawsuit against an employer relating to pharmacogenomics and genetic discrimination.

6. Myranda Smith | September 24, 2013 at 09:59 AM EDT

This article involving the railway company is very shocking. How would it even be relevant or go even unquestioned by these employees getting the tests done. It is disgusting how far some companies will go to thin the heard to save money, and for what reasons? Most companies just end up with major lawsuits anyway.

7. Katlyn Brown | September 24, 2013 at 11:52 AM EDT

I think that we will hear more about GINA in the future as more people turn to the gene testing to learn more about themselves and the diseases they are at risk for. It is extremely important that there are regulations and laws that protect the workers because as this source of health relations becomes bigger and bigger the employee must be able to keep thier information private. In response to Jasmine I think that most of the harassment would come from the employer , but some coworkers could be harassing because not all people understand how you contract certain conditions and think that if they come in contact with a person with a specific health risk that they could obtain it from being with them. Just an idea.

8. Seth Wollenhaupt | October 01, 2013 at 07:38 AM EDT

I do not know why everybody is so preoccupied about their risks for certain disease personally. Yes, I understand you can learn about \potential\ risks of certain diseases, yet I don't understand why you would want to have that lingering over your head for your entire life. I have a father who is diabetic; I have a risk of getting diabetes myself because of genetics. Why do people need to know the exactly amount of potential risk they have of certain diseases? I am comfortable knowing that I have a risk, yet scaring people with numbers isn't right. Is the reason of knowing this information used for patient prevention or for the doctors themselves? If healthcare professionals know this info, couldn't they advise you to take all these different drugs to try to reduce something that may never happen? I just don't believe knowing this information is good for patients.

9. Kortney Manning | October 01, 2013 at 10:43 AM EDT

I really enjoy that the law had to include that it would not be able to do anything about teasing, but only things that made the work environment harsh towards another person. Maybe it would be something like if people were searching the internet and found that a coworker would be likely to get AD, and posted posters around the office saying something like, \no wonder they cannot remember a deadline.\ Maybe that's the sort of thing they mean by that and they could discriminate by saying that they didn't want that individual on their team for a project. I'm sure that as time goes on though, that section of GINA will grow with more lawsuits if genetic testing gets rather popular. Otherwise, I'm stumped too about what they mean by using genetic information to harass or discriminate against a coworker.

10. Joshua Macks | October 04, 2013 at 12:35 PM EDT

I think that is is excellent that one cannot be discriminated against due to gene testing. This takes any negative risk out of testing for future diseases that one might be at risk for, and leaves the decision completely up to the patient. I found Kortney's post very funny about the AD teasing, but she raises an excellent point. Co-workers can discriminate and make people feel poorly about themselves, and it is important that they are also under the scrutiny of GINA.

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