Workplace Privacy and Discrimination Issues Related to Genetic Data: A Comparative Law Study of the European Union and the United States

Date01 March 2006
Published date01 March 2006
Workplace Privacy and
Discrimination Issues Related to
Genetic Data: A Comparative
Law Study of the European Union
and the United States
Nancy J. King,
Sukanya Pillay,
and Gail A. Lasprogata
Imagine you are applying for a clerical job in a laboratory.
The laboratory
offers you a job on the condition that you successfully pass a medical ex-
amination before starting work. You accept the offer and report to the
clinic selected by your new employer for the medical examination. You are
asked to complete a medical questionnaire pertaining to your medical his-
tory. You answer the questions, including whether you have ever had any
r2006, Copyright the Authors
Journal compilation r2006, Academy of Legal Studies in Business
American Business Law Journal
Volume 43, Issue 1, 79–171, Spring 2006
Assistant Professor, College of Business,Oregon State University, Corvallis, Oregon.
Assistant Professor, Faculty of Law, University of Windsor. I wish to thank the Law Foun-
dation of Ontario for research support, Dean Bruce Elman and faculty and students at
Windsor, and my research assistant, John Lea.
Assistant Professor, Albers School of Business and Economics, Seattle University.
This paper received the 2005 Holmes-Cardozo Award for Excellencein Research from the
Academy of Legal Studies in Business. We wish to express our sincere appreciation for the
encouragement of legal scholarship provided by the Academy of Legal Studies in Business,
and for the years of support from our colleagues in the Academy and in the Pacific Northwest
Academy of Legal Studies in Business.
The hypothetical situation described in this paragraph is based on the circumstances that led
to litigation by employees of a government-operated research facility who were required to
submit to preplacement medical examinations that included undisclosed genetic testing for
sickle cell trait, as well as testing for other sensitive medical conditions like pregnancy and
syphilis. See Norman-Bloodsaw v. Lawrence Berkeley Lab., 135 F.3d 1260, 1270–73 (9th Cir.
1998) (reversing the district court’s dismissal of this case on summary judgment because ma-
terial factual issues on the employees’ state and federal constitutional privacy claims existed
that merited trial; aff‌irming dismissal of the employees’ federal disability claims).
of sixty-one listed medical conditions. One of these conditions happens to
be sickle cell anemia.
You also provide urine and blood samples during
the medical examination, although you do not ask, and are not told, what
medical tests may be conducted on the samples. One of the tests your new
employer required the clinic to conduct was a genetic test for sickle cell
You receive health approval for the job, but are not told that genetic
tests were conducted as part of your medical examination. You also are not
provided with the test results. By the way, only African American appli-
cants for the job were tested for sickle cell trait, as it is known that this
genetic trait is much more prevalent in African Americans.
Now assume you start working in your new clerical job in the labo-
Months pass and you f‌ile a disability claim for a work-related injury
in the form of carpal tunnel syndrome.
Carpal tunnel syndrome is be-
lieved to be caused or exacerbated by repetitive hand or wrist motions.
‘‘Sickle cell anemia, or sickle cell disease, is a chronic inherited anemia in which a large pro-
portion or the majority of red blood cells tend to sickle.’’ MERRIAM WEBSTERSCOLLEGIATE
DICTIONARY 1089 (10th ed. 1996). ‘‘Sickle-cell trait is an inherited blood condition in which
some red blood cells tend to sickle but usually not enough to produce anemia, which occurs
primarily in individuals of African, Mediterranean, or southwest Asian ancestry, and which
results from heterozygosity for a semidominant gene.’’ Id. As explained by the court in
The sickle cell gene is only semi-dominant: if the carrier of the gene is heterozygous
(meaning that the gene is paired with a non-sickle cell gene), some of his or her red blood
cells may sickle, but usually not to a suff‌icient degree to result in actual sickle cell anemia.
1235 F.3d at 1265.
See supra note 2 for a discussion of sickle cell trait and sickle cell anemia.
This hypothetical is based on the circumstances involving unauthorized genetic testing by a
railroad employer of employees who had f‌iled work-related disability claims for carpal tunnel
syndrome, leading to a lawsuit f‌iled by the employees’ union representatives and litigation
f‌iled by the Equal Employment Opportunity Commission (EEOC). See EEOC v.Burlington N.
Santa Fe Ry.,Civ. No. 01-4013 MWB (N.D. Iowa April 18, 2001) (granting an order related to
a preliminary settlement agreement); see also Patricia A. Roche, The Genetic Revolution at Work:
Legislative Efforts to Protect Employees, 28 AM. J.L. & MED. 271, 272 (2002) (discussing the action
brought by the EEOC against Burlington North Santa Fe Railway after the agency received
complaints from employees that the company had been secretly testing their DNA).
Carpal tunnel syndrome is a condition caused by compression of a nerve where it passes
through the wrist into the hand and is characterized by weakness, pain, and disturbances of
sensation in the hand. MERRIAM WEBSTERSCOLLEGIATE DICTIONARY 174 (10th ed. 1996).
Roche, supra note 4, at 276.
80 Vol. 43 / American Business Law Journal
Youassume that your condition was caused by long hours of typing at work
on a computer keyboard. Your employer requires you to undergo a phys-
ical examination by the company doctor to determine if your condition is
work-related. As part of the medical examination, you provide a blood
sample. Again you are not told what tests will be performed on the blood
sample, but you learn that your blood was tested to determine if you have a
genetic condition that involves a deletion on chromosome seventeen. One
of your employer’s managers requested the genetic test under the mistak-
en belief that this test would reveal if your genes, rather than the work,
caused your carpal tunnel syndrome. You learn about your employer’s
genetic testing practices from another employee who, during a physical
examination related to his disability claim for carpal tunnel syndrome,
asked the examining doctor why he was being tested and learned the
genetic nature of the test.
Should your new employer have the right to require you to provide
genetic information as part of your medical history and to conduct genetic
testing as part of a preplacement physical examination or a physical ex-
amination related to a work-related disability claim? Should you have the
right to be told that genetic tests will be conducted as part of these work-
place medical examinations? Do you want to know the results of genetic
tests conducted by doctors on behalf of your employer? What are the pa-
rameters of permissible uses for genetic information by employers? Should
you have legally protected workplace privacy interests in your genetic in-
formation? Should some uses of genetic information by your employer be
prohibited as unlawful workplace discrimination?
In this article we will address important questions such as these in the
context of a comparative law study of genetic workplace privacy and non-
discrimination in the European Union (EU) and the United States. Advo-
cates of personal data protection and workplace privacy in Europe have
reason to be optimistic these days. Broad privacy protections for personal
information are now in place throughout the EU.
All f‌ifteen countries that
See Frank Hendrickx, Protection of Workers’ Personal Data in the European Union: General Issues
STUDIES 15 (2002), available at
dataprotection_hendrickx_combinedstudies_en.pdf (reporting that most Member States have
laws, or are in the process of preparing new laws, that transpose the EU Privacy Directive into
national legislation); see also Data Privacy Directive, Council Directive 95/46, 1995 O.J.
(L 281) 31 [hereinafter Privacy Directive].
2006 / Workplace Privacy 81

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