ABSTRACT. Genetic testing in the workplace is atechnology both full of promise and fraught withethical peril. Though not yet common, it is likely tobecome increasingly so. We survey the key argumentsin favour of such testing, along with the most signif-icant ethical worries. We further propose a set ofpragmatic criteria, which, if met, would make it per-missible for employers to offer (but not to require)workplace genetic testing.

KEY WORDS: genetic testing, privacy, workplacehealth and safety, workplace screening

Introduction

The rapid advances made in genetic research andtechnology over the last few decades have led toa host of important advances in the detection(and hopefully soon the treatment) of geneticconditions and diseases. These developments havealso raised ethical concerns about how resultingtechnologies will be implemented, and abouthow their implementation will impact differentcommunities. One particular set of concerns

surrounds the use of genetic testing in the work-place. Though not yet common, workplacegenetic testing is bound to become a real optionfor employers as genetic technologies improve.3

Genetic testing comes in two forms: screeningand monitoring. Genetic

monitoring (which tendsto be supported by labour advocates) detectsgenetic abnormalities potentially caused byexposure to workplace toxins: an alert to hazardsin the workplace, similar in principle to radia-tion detection badges. By contrast, geneticscreening (the focus of this paper), is used to detecthereditary disease or susceptibility to workplacetoxins. This could be used for pre-employmenttesting, employee placement, and risk avoidance– all useful tools for employers (Department ofLabor et al., 1998).

What can be screened for and why?

Genetic screening can be used to detect whichindividuals have a genetic makeup associated withparticular hereditary diseases, such as sickle cellanaemia, cystic fibrosis, and Huntington disease.Screening can also detect genes that conferincreased susceptibility to workplace toxins orenvironmental factors, e.g., N-acetyltransferasephenotype (increased risk of bladder cancer inthose exposed to carcinogenic arylamines (Vineisand Schulte, 1995)), or Glu-69 (heightened sus-ceptibility to beryllium, which can cause pul-monary disease (American Nuclear SocietyEnvironmental Sciences Division, 1998)).4

Employers might benefit from geneticscreening through reduction in costs associatedwith occupational disease, e.g., lost productivity,excess absenteeism, worker’s compensation

Ethics and Genetics: Susceptibility Testing in the Workplace1

Journal of Business Ethics 35: 235–241, 2002.© 2002 Kluwer Academic Publishers. Printed in the Netherlands.

Chris MacDonaldBryn Williams-Jones2

Chris MacDonald is a Bioethicist in the Department ofBioethics at Dalhousie University. His research inter-ests span across moral theory, bioethics, business ethics,and professional ethics. Dr. MacDonald’s research is currently focused on issues of business ethics and profes-sional ethics as they apply to the field of biotechnology.

Bryn Williams-Jones is a Doctoral Candidate andGraduate Research Associate at the Centre for AppliedEthics, University of British Columbia. His researchfocuses on genetics, ethics and commercialization. He isparticularly interested in the social, ethical, and policyimplications of the commercialization of genomic andgenetic technologies.

payments, health insurance premiums, and legalliability (Andre and Velasquez, 1991). Whilesome tests are still relatively expensive, they willbecome more affordable as technologies develop(e.g., DNA chips, cf. Wickelgren, 1998), andthrough cost savings from maintaining a healthyworkforce. A further argument in favour ofgenetic screening is that in order to maintain ahealthy and productive workforce and safeguardcorporate interests, companies have to be selec-tive about who they hire or retain as employees.It can be argued that companies are not unfairlydiscriminatory in selecting against employees atrisk for hereditary disease or genetic suscepti-bility. Workplace discrimination is generally notthought to be unfair if the issue is a “bona fide”requirement of the job. And it may simply notbe economically feasible for the employer toeliminate all substances that put a few hypersen-sitive employees at risk. It may be more sensible,from an economic point of view, not to hiresusceptible workers or to transfer susceptibleworkers to different positions. Finally, if chal-lenged that using genetic screening in the work-place is unfairly discriminatory, employers canreply that prospective (and current) employees donot have a right to work at a specific company,and that those who object to screening can seekemployment elsewhere. Of course, this reply isplausible only while workplace genetic testingremains rare – if it becomes common practice,some people may become unemployable becauseof genetic susceptibility.

It can also be argued that workplace geneticscreening will benefit both workers andemployers by helping to maintain a healthyworkforce. Employers have a general ethicalobligation to minimize the likelihood of work-place illness and injury. One way to approach thisobligation is to improve the workplace – that is,to tailor the workplace to needs of the worker.But, since workplace illness and injury typicallyinvolve interaction between some characteristicof the workplace and some characteristic of theworker, another way to approach this obligationis to tailor the worker to the workplace. If thelatter approach is taken, it will generally meannot modifying particular workers, but changingwhich workers have which jobs. That is, it will

mean avoiding placing workers into work envi-ronments that, because of particular characteris-tics of those workers, are particularly dangerousto them. This was the rationale for DuPont’svoluntary sickle cell anaemia screening programin the 1970s, and for the widespread restrictionsin the chemical industry that preclude womenfrom working in environments that expose themto chemicals known to cause birth defects (cf.Draper, 1991).

Screening may also benefit workers directly byproviding information that will allow them toavoid placement in potentially harmful environ-ments, thereby sparing workers and their familiesthe physical, emotional, and financial burdens ofdisabling disease or premature death. The sug-gestion is that, once informed of their increasedrisk, workers can evaluate their situation andtake voluntary preventative measures to avoidexposure.

Opposition to workplace screening

The above arguments in favour of geneticscreening will be unsatisfactory to many.Screening, it may be argued, is unjustly discrim-inatory, is a threat to privacy, offers only a ques-tionable degree of accuracy, and does not ensurea safe working environment. On these grounds,some will argue that genetic screening should berestricted.5

Justice requires people be treated equally unlessthere are relevant reasons for different treatment.Differences in skill, knowledge or experiencewould be relevant criteria for hiring or place-ment. However, traits that are not within thecontrol of the individual, such as gender, eth-nicity, or disability, are commonly held (e.g., inthe Canadian Charter of Rights and Freedoms, andthe U.S. Americans with Disabilities Act) to beunjust grounds for discrimination. Thus it hasbeen argued that one’s genetic makeup, likedisability, should not be reason for discrimination(cf. Annas, Glantz et al., 1995; Task Force onGenetic Information and Insurance, 1993;Murray et al., 2001). Further, given that pre-dispositions to genetic diseases may be associatedwith specific ethnic backgrounds (e.g., sickle cell

236 Chris MacDonald and Bryn Williams-Jones

anaemia in people of African descent or Tay-Sacks disease in Ashkenazi Jews) there is concernthat screening could stigmatize and negativelyimpact historically disadvantaged groups (cf. TaskForce on Genetic Information and Insurance,1993).

The usefulness and scientific validity of work-place genetic screening have also been challenged(Draper, 1991; Department of Labor et al.,1998). Screening is not diagnostic, but predictsonly risk or susceptibility. The informationprovided by means of genetic testing will notdetermine whether a person will in fact developa condition, only that they are more likely to doso than others.6 Moreover, there are problemswith the sensitivity and specificity of thescreening methods – a test may be accurate butstill miss people who are at risk (a “falsenegative”), or on the other hand, label somepeople as at increased risk who are not actuallysusceptible (a “false positive”), thereby increasinganxiety and possibly resulting in the unwarrantedtermination of a position. To be “at risk” impliesa probability of developing a condition that mightaffect performance – even with a positive resulton a test, a person might never develop the con-dition. Nor does being at risk directly affectcurrent ability to perform, except to the extentthat this information creates fear and anxiety,which could affect a person’s performance.Confidence in genetic screening may also beunreasonable given the complexity of the humangenome and the complexity of its interactionwith the environment (Lewontin, 2000). Most ofthe conditions that would likely be of interest forworkplace testing are mutlifactorial, i.e., there arenumerous factors involved in the development ofdisease, only some of which are genetic. Andeven when there is an association between aspecific gene and development of disease, theremay be other (unknown) genetic factors neces-sary before the target gene gets “turned on” andcauses cancer, for example. Thus a person whotests positive for “the gene” in question may stillnever develop the disease (Baird, 2001).

There is also concern that genetic screeningwill lead to employees not being treated as indi-viduals, but as “risk groups” who are in someway to blame for their conditions, thereby dis-

tracting from the responsibility borne by thecompany for workplace safety – employers shouldbe improving safety and removing hazards, notshifting responsibility to employees (Kegley,1998).7

Given that the gap between diagnosis andtreatment is still great for most genetic disorders,screening will likely be of dubious direct medicalbenefit to employees. Even if an employee isfound to be at risk, the best that can be offeredis transfer to a different position and increasedmonitoring. But genetic information can be asignificant psychological and social burden, espe-cially if one is told one has “a defective gene”or is “at risk.” Such news might affect a person’sconception of health and identity,8 lead tostigmatization, or even make a person unem-ployable or uninsurable. (Such risks might bemitigated through genetic counselling, but coun-selling is unlikely to eliminate such risks alto-gether.) For these reasons, it is widely arguedthat genetic information should be treated aspersonal and private,9 and that access by thirdparties should require convincing justification(Secretary’s Advisory Committee on GeneticTesting, 1999). Forcing an employee to undergogenetic screening also forces the employee to dealwith the resulting information, and studies onthe psychological impact of genetic testing haveshown that it may sometimes be better “not toknow” (Benjamin et al., 1994; Codori, 1997;Cox and McKellin, 1999).

Is there room for compromise?

Those in favour of genetic screening are probablyjustified in citing employee benefit, corporateresponsibility, and economics as reasons for usinggenetic testing to select against certain employeeswhile protecting those already employed whomay be susceptible. Opponents to screening alsoprovide persuasive arguments for the need forconcern about justice and discrimination, scien-tific validity, and privacy. There are furtherconcerns, particularly in the U.S., regarding risksto employees’ insurability (for both health careand life insurance) (Murray et al., 2001). Whilewe find the arguments against screening at this

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time are in general more persuasive (given therather low accuracy of testing, the low utility ofrisk information, and the clear potential forinjustice and discrimination), screening may bea viable option – both technically and ethically– in certain specifiable situations either now orin the future. Obviously the accuracy of testingmethods must be improved, but more impor-tantly, testing must be administered in a just andrespectful manner.

Given that workplace genetic testing is a tech-nology both full of promise and fraught withethical peril, we suggest a pragmatic approachthat allows for the possibility of workplacegenetic testing, but that attempts to minimize itsnegative effects. Each of the positive and negativefactors alluded to above warrants serious ethicalinvestigation. Such work has begun, but is farfrom adequate to provide satisfying answers. Inthe meantime, we propose a set of criteria, thesatisfaction of which would make it prima faciepermissible for employers to offer genetic testingto workers. Requiring workers to submit togenetic testing is significantly more problematicmorally. Forced testing would constitute aninvasion of privacy, and expose the worker – ona non-voluntary basis – to a range of poorlyunderstood risks. Thus it may not be possible toidentify circumstances in which such a require-ment would be ethically permissible. We do notattempt that task here. As a result, we restrict ourdiscussion to the search for conditions underwhich it would be permissible for employers tooffer employees the opportunity to be tested.10 Wecontend that it is ethically permissible to offergenetic testing to employees if the following sixconditions are met:

1. A genetic test (for a specific condition)must be available which is highly specificand sensitive and offers an acceptably lowincidence of both false positives and falsenegatives; such a test must test for a genethat is sufficiently penetrant for the testresult to have some important health impli-cation.

2. Testing should be carried out by an inde-pendent lab, and results of genetic testsshould be given to workers directly, either

by a geneticist or a genetic counsellor; testresults should be held confidential, andrevealed to the employer only at theemployee’s request;

3. Pre- and post-test genetic counselling mustbe available from a qualified health profes-sional, and paid for by the employer,regardless of the outcome of the test;

4. The gene being tested for must not beprominently associated with an identifiableand historically disadvantaged group;

5. Where relevant, the employer must guar-antee continued access to group insurance;

6. The employer must ensure that if theemployee chooses to reveal that she hastested positive, suitable policies are in placeto ensure a reasonable degree11 of jobsecurity.

We feel that if the above criteria were met, itwould be ethically permissible to offer (but notto require) workplace genetic testing. Meetingthese criteria would allow employers to offergenetic testing, and further to have reasonableanswers in the face of most of the objectionsnoted above. The only concern not directlyaddressed by meeting these six criteria is theworry that, in focusing on tailoring the work-force to the workplace environment (by usinggenetic testing to weed out those workers whoare particularly susceptible to workplace hazards)employers may neglect improvements to theworkplace that would benefit all employees. Itwould of course be possible to further stipulatethat, in order for it to be permissible to offergenetic testing, employers must also ensure thatother appropriate measures are taken to clean upthe workplace so that the interests of “normal”workers as well as “at risk” workers are served.We feel, however, that the obligation to providea safe workplace for all employees is a generalissue that can be separated from the issue ofgenetic testing.

If the six criteria above are met, then anygenetic test that is offered holds the promise ofbeing good for all involved. The employerreduces costs associated with employee illness; at-risk employees gain the information needed toremove themselves from work environments that

238 Chris MacDonald and Bryn Williams-Jones

pose special risks for them; and employees foundnot to be at increased risk gain the comfort ofthat knowledge. These advantages (in the absenceof the disadvantages avoided through meeting oursix criteria) justify offering testing. They do notjustify failure to maintain a reasonably safe envi-ronment for all employees: employees found notto be at risk gain only psychological comfortfrom testing, and untested employees gainnothing at all from testing. The availability oftesting does little if anything to changeemployers’ health-and-safety related obligationsto these employees.

Next, let us ask, is it ever ethically mandatoryfor employers to offer genetic testing? We believethat it is, and suggest that it be consideredmandatory for an employer to offer genetictesting to employees if conditions 1 through 6above are satisfied, and if, in addition, the fol-lowing conditions are met:

1. Knowing their status with regard to thegenetic characteristic in question can rea-sonably be expected to influence at leastsome employees’ decision to remain in theircurrent position;

2. The cost of the test is “reasonable” (e.g.,is similar to the costs of other insuredmedical services, or other normal work-place benefits).

We think that the possibility of an obligationto offer testing to employees – and the financialburden that would imply – goes hand in handwith the possibility of offering genetic testing toemployees, and the risks such testing wouldimply for them.12 In considering whether theyfavour a world in which employees may be tested,employers should also consider whether they alsofavour a world in which they may be obligated tooffer testing.

The future is likely to see a rapid expansionin the number of genetic conditions or suscep-tibilities that can be tested for, and testing willbecome cheaper, more accurate, and more widelyavailable (Silverman, 1995; Secretary’s AdvisoryCommittee on Genetic Testing, 1999; Williams-Jones, 1999). This could provide for better mon-itoring and screening of employees to increasesafety, but only if both the motivation and the

process are fair and non-discriminatory. Giventhe often restrictive nature of many governmentalresponses to developments in genetic researchand technology (e.g., the response to fetal cellresearch, cloning, etc.), screening tests will almostcertainly be restricted unless they are provenscientifically valid and used in a just and equi-table manner. Genetic technologies are becomingincreasingly important in our lives – somethingthat is not soon likely to change. Careful thoughtneeds to go into the conditions under whichsuch technologies should be welcomed into ourlives.

Notes

1 Authorship of this paper is shared equally. Theauthors wish to thank Charles Weijer, Susan M. Cox,Jason Scott Robert, and Paul Miller for helpfulcomments on various drafts. Many of the ideas herehave also benefited from ongoing critique and dis-cussion with the Genetics and Ethics Research Groupat the UBC Centre for Applied Ethics.2 Bryn Williams-Jones’s research is supported inpart by The Canadian Health Services ResearchFoundation (CHSRF), the Social Sciences andHumanities Research Council (SSHRC), and theFaculty of Graduate Studies and Centre for AppliedEthics at UBC.3 For a review of some of the forms of genetictesting currently becoming commercially available(and the social, ethical and policy implications of thesedevelopments), see (Williams-Jones, 1999; Burgess,1999).4 We refer here primarily to laboratory tests indi-cating the presence of a particular gene. Similar infor-mation can sometimes be acquired simply by meansof taking a family history, when the inheritancecharacteristics of a particular gene are known. Forexample, since the gene for Huntington disease isdominant, an individual whose family history includesa parent with the disease would have, based on familyhistory alone, a 50% chance of inheriting the gene(and thus of manifesting the disease), while theirchildren would in turn be at 25% risk. Some of theworries about genetic testing thus should also applyto the gathering of family histories.5 The scenario in which workplace genetic testingis carried out in an oppressive manner is exemplifiedin the 1997 science fiction movie, “Gattaca.” But not

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all examples come from science fiction. In 1970, atest was developed to screen for carriers of sickle celltrait, a recessive genetic condition that causes a severeform of anemia, and affects 1 in 500 AfricanAmericans. The U.S. Air Force used this test to refuseAfrican-Americans with this trait from becomingpilots. The Air Force was afraid that reduced oxygenlevels in cockpits would trigger the disease. However,this recessive condition only occurs in individuals whohave both copies of the faulty gene (and will thus havea history of disease) as opposed to carriers who haveone copy, but are unaffected (those the test waspicking up). This test was used as justification to dis-criminate against a group of people, who would neveractually develop the condition. The Air Force endedits sickle cell screening program in 1981 (Draper,1991). More recently, The Burlington Northern &Santa Fe Railroad Co. was sued (for violating theAmericans with Disabilities Act) by the U.S. EqualEmployment Opportunity Commission, on behalf ofthe employee union, for obtaining blood samples andconducting genetic testing on employees claimingwork-related carpal tunnel syndrome (Ceniceros,2001).6 There are rare exceptions, such as the test forHuntington disease. Individuals who test positive forthe expanded number of tri-nucleotide repeats asso-ciated with HD have (nearly) a 100% chance of devel-oping this degenerative neurological disorder at somepoint in their lives. (Such a gene is called “highlypenetrant” by geneticists.) It would be too easy tobe misled, by examples like Huntington disease, intothinking that genetic tests usually provide certainty.7 As Trudo Lemmens has noted (1997, p. 60), thefocus on genetic susceptibility ignores the fact thatworkers who do not have the gene associated withincreased susceptibility to some hazard can nonethe-less still be affected by that hazard. Focusing ongenetic screening obscures the needs of “normal”workers.8 We might reasonably wonder, of course, whetherthe impact of genetic testing is different in this regardfrom the impact of, for example, intelligence testing.9 Note that the possibility of misinterpretation ofgenetic information may be a greater threat thansimple lack of control over personal information.10 Some will wonder why we need justificationeven to offer testing; that is, they will wonder whyemployees’ consent to being tested is not sufficient.The answer lies primarily in the possibility that a)the offer may in some sense be coercive; and b)employees may not in all cases understand the rami-fications of consenting to be tested. As a parallel, note

that consent is not always considered sufficient tojustify subjecting patients to medical research. See(Weijer et al., 1997). 11 Just what would constitute a “reasonable” degreeof job security is an important question; an employer’sjustification in offering genetic testing would depend,in part, upon justifying suitably the degree of jobsecurity that was ensured.12 In a similar vein, Lemmens (1997, p. 70) arguesthat when reliable genetic monitoring is available,providing such monitoring should be consideredobligatory.

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Chris MacDonaldDepartment of Bioethics,

Dalhousie University, Canada

Bryn Williams-JonesCentre for Applied Ethics,

University of British ColumbiaCanada

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