Eva Lorenz 1

This Comment focuses on the problems associated with the use of employment-based genetic testing.  Recently, the German National Ethics Council (“NEC”) drafted a list of recommendations to regulate the use of predictive testing in the workplace.  This problem of genetic testing is not limited to Germany-similar cases have been reported in the United States.  The lack of a federal framework to regulate the use of genetic testing in the workplace creates uncertainty for employees and employers.  Though it is likely that any federal framework will require amendments, the increased certainty associated with a uniform federal law will likely outweigh any shortcomings.  This Comment analyzes the recommendations of the NEC as a possible blueprint for a uniform law in the United States.

“[O]nce a tool is developed there are considerable pressures for implementation.”2

I. Introduction

Imagine you are a thirty-six year old woman who always wanted to become a teacher.  You have finished high school, graduated from college, passed all of the professional tests, and are now on the verge of getting a tenure track position to teach.  Just one more test and you will be there.  There is a problem, however, and it is that the final test is a physical examination, which is a requirement for public servants seeking tenure track positions.  Part of the physical is a questionnaire that seeks information about family health history.  You put down that your father has Huntington's disease (“HD”, also called Huntington's chorea).3  You pass your physical, but are still denied a teaching position by the state.  Why?  Because you have a high risk of carrying the Huntington's gene and therefore have a high likelihood of developing an incurable disease that may force you to seek early retirement.  

While this sounds like a fictional story from George Orwell4 or Aldous Huxley,5 this was the reality faced by a young woman in Germany, and it could happen in any country where medicine has advanced enough to enable testing for inherited diseases.  The fact that the young woman had a fifty percent chance of carrying a disease gene was deemed sufficient by a lower court in Germany to deny her a teaching position.  The woman appealed, arguing that she has a fifty percent chance of being healthy and that questions regarding the health status of close relatives should not be part of a physical that seeks to determine whether she is fit to teach.6  The administrative court granted her relief and she was given a teaching position.  

Despite the positive outcome for the plaintiff, some concerns remain.  The language of the decision and the recommendations of the German National Ethics Council7 (“NEC”) leave open what kind and how much information should be shared with third parties as part of pre-employment physicals.

This Comment presents a critical analysis of the NEC recommendations for the use of predictive testing in the workplace and their possible use as a blueprint for comparable legislation in the United States.  A federal law would generate certainty regarding the use of predictive testing in the workplace by replacing the existing patchwork of laws and regulations.  While many people already view genetic testing with suspicion, it is important to keep in mind that predictive testing can be useful in determining whether certain people are at an increased risk for exposure-related illnesses.  A balance between the benefits of predictive testing in protecting workers from exposure hazards and the possible abuses of testing for discriminatory purposes is best achieved through a uniform law at the federal level that covers all employees and employers.  Part II of this Comment is a primer on genetics and genetic testing.  Part III provides a brief introduction to the NEC and analyzes the recommendations of the NEC dealing with the use of predictive testing in the workplace.  The NEC recommendations are compared to existing legislation in the United States to determine whether the NEC proposal should serve as a template for uniform federal laws in the United States.8  While the United States does not have a national law regarding the use of genetic testing to determine employment eligibility, the Americans with Disabilities Act,9 state-based laws, and pending federal legislation indicate that there have been attempts to regulate genetic testing in this country.  Part IV summarizes the existing case law, which demonstrates the need for a better legal framework, and will also reiterate the danger of using genetic testing as a discriminatory tool in the workplace.  Part V analyzes the split in the minority community regarding access to genetic testing, which underscores the need for an in-depth debate on the future use of employment-based predictive testing in the United States.

Currently, genetic information about employees in this country is protected to some degree through a mixture of case law, state-based legislation, and federal statutes.  However, a uniform federal framework is necessary to minimize the abuses and uncertainties that are possible under the current system, and the proposal by the NEC may provide some guidance for the establishment of such a federal framework.  While attempts at establishing such a framework may evoke opposition from groups that fear possible discriminatory uses, the increased certainty associated with uniform federal rules as well as the possibility of covering all employees lend support to establishing such a framework at the federal level to replace the existing patchwork of laws and statutes.  This Comment, therefore, uses the comparison with the NEC recommendations to point out how a federal law regulating genetic testing in the workplace could be structured for use in the United States in order to increase the certainty associated with the use of predictive testing in the workplace.