Learning more about just where our grandparents, great-grandparents and even multiple “greats” came from, seems to bring us joy and add to our feelings of connectedness to our families and the countries where they once lived.  This has been made possible and popular through reasonably affordable DNA testing, requiring nothing more invasive than spitting into a small container, sending it in to the advertised company and getting a fairly comprehensive report in return.

In addition to learning about family heritage, by having the option to agree that your DNA information may be matched with that of others who have also agreed to “open source,” numerous heartwarming accounts of siblings reunited and a parent or child found, have occurred.  In fact, a dear friend of the author of this blog found out she had a half-brother that she, before then, did not know existed; since the revelation made possible by the DNA open-source sharing, her mother confirmed she had given a baby boy up for adoption long ago.  [For the curious reader, the story progresses happily, with various members of birth and adoptive families building friendships and blending families.]

But be aware that the DNA results legally could be used by others in ways you never imagined or would have agreed to if consulted.  A recent investigation into a serial murder case in Sacramento, unsolved for 32 years, provides a stark example.  Investigators used an open-source genetic database, GEDmatch, to determine whether any family trees contained matches to DNA samples preserved from the crime scenes. Once investigators found a family tree in which the crime scene DNA fit, they then used known facts about individuals in that family to create a narrower list of “suspects” within the family.  And from this the murderer was identified, caught, and convicted.

We certainly hope that none of our readers are themselves or have relatives who have anything to worry about when it comes to being accused or guilty of such a crime [but if you do, we can refer you to several fine criminal lawyers].  The point is that you need to be aware when deciding whether to have your DNA tested and/or treated as “open source” that DNA samples provided to commercial ancestry testing kits contain a treasure trove of health and ancestry information about you and your family and that information can be used for reasons you have not approved or even considered.

 What if any implication does this have to privacy in your workplace? As you may already know, employers are by law prohibited from seeking health information (and DNA is included) about an employee or candidate for employment except to the extent necessary to make decisions critical to his/her ability to perform the job.  For example, an applicant with chronic back problems applying for a job that requires an ability to routinely lift 50 pounds may need to provide a doctor’s assessment that the back issue does not preclude the candidate from performing this function.  As another example, an employee who requests intermittent time off, under the Family and Medical Leave Act (FMLA) or any other applicable law, can be required by his/her employer to provide a doctor’s assessment of the need for and likely duration of the leave.

And as you likely also know, any medical information an employer obtains about an employee may be shared only with those who have a need to know, and also all medically related documentation must be kept in a separate and secured file (not with the employee’s personnel file).

In the last couple decades, medical professionals have used genetic testing (DNA testing) to confirm or eliminate from possibility a genetic condition, and also to design drug regimens for treatment.  With the use of genetic testing increasing dramatically, Congress recognized that the genetic/DNA information collected to aid the patient could instead be misused in ways that harm him/her.  To address this, in 2008 the U.S. Congress passed the Genetic Information and Non-Discrimination Act (“GINA”), which requires medical professionals, as well as insurance companies, to  erect robust protections against unauthorized disclosure of the information and it prohibits insurance companies from considering the genetic/DNA information in making  decisions about eligibility, extent of coverage, and premiums.  GINA also prohibits employers from considering any genetic/DNA data it may know about a candidate or employee when making decisions about hiring, firing, promotions, or any other terms or conditions of employment.

In more detail, GINA protects Americans from discrimination (in health insurance and employment decisions) on the basis of genetic information.  GINA prohibits American insurance companies and health plans (including both group and individual insurers, as well as federally-regulated plans) from:

  • looking at your predictive genetic information or genetic services before you enroll;
  • “requesting or requiring” that you or your family members take a genetic test;
  • restricting enrollment based on genetic information;
  • considering genetic information in setting premiums.

GINA also prohibits U.S. employers (including employment agencies, labor organizations, and training programs) from:

  • discriminating against an individual based on his/her genetic information in the hiring process or when determining compensation;
  • “requesting or requiring” a candidate or employee, or a member of their family, take a genetic test;
  • disclosing genetic information in their possession except under specific and specially controlled circumstances.

For more information on GINA, visit: https://www.eeoc.gov/laws/types/genetic.cfm.  While GINA applies to almost every workplace in America, it does not apply to companies with fewer than 15 employees.  GINA also has no relevance to any form of insurance other than health insurance.  For example, GINA is not relevant (does not provide protections) when it comes to disability and long-term care insurance.  [A few states have enacted limited privacy and use protections that are not available under GINA.]

Important in the context of this article is that GINA does not apply to commercial DNA testing kits. When you give your genetic information to a commercial genetic testing company, you may be granting access not only to your DNA information but also to that of your family members, known and unknown.

The lawyers at Faulkner Law Offices, PLLC have decades of experience advising and representing both management and employees in all aspects of employment law, including privacy rights and genetic testing.