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

• DOI: http://doi.org/10.1111/j.1744-1714.2006.00012.x
• Author: Sukanya Pillay,Nancy J. King,Gail A. Lasprogata
• Date: 01 March 2006
• Published date: 01 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,

n

Sukanya Pillay,

nn

and Gail A. Lasprogata

nnn

I. INTRODUCTION

Imagine you are applying for a clerical job in a laboratory.

1

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

79

American Business Law Journal

Volume 43, Issue 1, 79–171, Spring 2006

n

Assistant Professor, College of Business,Oregon State University, Corvallis, Oregon.

nn

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.

nnn

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.

1

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.

2

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

trait.

3

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-

ratory.

4

Months pass and you f‌ile a disability claim for a work-related injury

in the form of carpal tunnel syndrome.

5

Carpal tunnel syndrome is be-

lieved to be caused or exacerbated by repetitive hand or wrist motions.

6

2

‘‘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 WEBSTER’SCOLLEGIATE

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

Norman-Bloodsaw:

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.

3

See supra note 2 for a discussion of sickle cell trait and sickle cell anemia.

4

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).

5

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 WEBSTER’SCOLLEGIATE DICTIONARY 174 (10th ed. 1996).

6

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.

7

All f‌ifteen countries that

7

See Frank Hendrickx, Protection of Workers’ Personal Data in the European Union: General Issues

and Sensitive Data, in PROTECTION OF WORKERS’PERSONAL DATA IN THE EUROPEAN UNION:TWO

STUDIES 15 (2002), available at http://europa.eu.int/comm/employment_social/labour_law/docs/

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