Paul R. Billings, et al., "Discrimination as a Consequence of Genetic
Testing," American Journal of Human Genetics 50 (1992), 476-482.
© 1992 by the American Society of Human Genetics. Reprinted by permission
of the author and the publisher, the University of Chicago Press.
INTRODUCTION
The accelerating development of biochemical and DNA-based diagnostic tests for human genetic conditions in the last decade has engendered a revolution in genetic diagnosis. Numerous families faced with agonizing clinical or family planning decisions have been aided by information obtained through these tests (Phillips 1988). With further refinement of the human genetic map (Donis-Keller et al. 1987; McKusick 1988), the limited repertoire of genetic tests for the predisposition to common conditions such as cancer, cardiovascular diseases, and mental disorders may markedly expand (Lander and Botstein 1986; Scott 1987).
Insurance companies, private employers, governments and educational institutions
all have an immediate or potential interest in promoting large-scale genetic
screening to identify individuals carrying disease-associated genes (Motulsky
1983; Murray 1983: Uzych 1986; Hewill and Holtzman 1988; Holtzman 1988,
1989; Nelkin and Tancredi 1989; Office of Technology Assessment 1990; Natowicz
and Alper, in press). In addition, economic pressures to apply genetic
tests to broader sections of the population may increase as biotechnology
companies develop and sell genetic testing products and services (Hewitt
and Holtzman 1988). Finally, the pace of development and application of
DNA and biochemical genetic tests and their acceptance by the public may
be accelerated by the recent widespread media coverage of the work of human
geneticists.
As a result of the pressures to implement genetic technologies, problems
engendered by their application may be overlooked. For example, with relatively
few exceptions, our knowledge of how genes produce clinical illnesses is
still quite limited. Yet an evaluation of the predictive value for clinical
disease, utility, and impact is necessary before general use of genetic
tests can be endorsed. In addition, some authors fear that an uncontrolled
use of the tests may lead to a revival of social policies based on eugenics
(Kevles 1985).
While there have been theoretical concerns about prejudices and discrimination
surrounding genetic conditions, few investigations of these issues have
been published (Hampton et al. 1974; Motulsky 1974; Kehen and Schmidt 1978;
Murray 1991). Studies on the impact of genetic counseling have generally
focused on subjects' understanding of genetic information and on family
planning decisions (Leonard et al. 1972; Evers-Keibooms and van den Berghe
1979); evaluations of the impact of genetic screening programs are typically
concerned with issues of diagnostic sensitivity and specificity, medical
efficacy, and cost-effectiveness and have usually not assessed long-term
nonclinical outcomes. The personal costs of consenting to genetic testing
and screening have not been studied and raise many issues of considerable
significance.
Given this situation--powerful and attractive new techniques, social and
economic forces pressing for their application, and an incomplete understanding
of the potential negative social and personal consequences of genetic testing--concern
about the burdens engendered by widespread utilization of genetic tests
seems justified. One such issue is the problem of genetic discrimination.
This [essay] describes the results of a preliminary study of individuals
labeled with genetic conditions. This study is not a survey; it does not
purport to give statistically significant information about the extent
of genetic discrimination. Instead, the aim of the study was to discover
whether incidents which may reflect genetic discrimination are occurring
in the workplace, in access to social services, in insurance underwriting,
and in the delivery of health care. If the existence and range of genetic
discrimination revealed by this study are confirmed by other investigations,
then current policies and practices regarding the application of genetic
testing and utilization of information obtained from such testing may need
to be reconsidered.
METHODS
A definition of genetic discrimination was developed for this preliminary study based in part on the work of the Genetic Screening Study Group, a Boston-based public interest group (Dusek 1987; Billings 1989; Beckwith 1991; Natowicz and Alper, in press). Discrimination stemming from supposed hereditary transmission of a condition can be obvious, as in the case of an individual who was denied a job because a health record noted that the applicant's mother was "schizophrenic." In other instances, the distinction between discrimination based on clinical disability or illness, and that arising from genetic aspects of a condition, may be more difficult to determine. For the purposes of this study, genetic discrimination is defined as discrimination against an individual or against members of that individual's family solely because of real or perceived differences from the "normal" genome of that individual. Genetic discrimination is distinguished from discrimination based on disabilities caused by altered genes by excluding, from the former category, those instances of discrimination against an individual who at the time of the discriminatory act was affected by the genetic disease.
An advertisement to solicit cases of possible genetic discrimination was
mailed to 1,119 professionals working in the fields of clinical genetics,
genetic counseling, disability medicine, pediatrics, and social services
in New England. This solicitation was also published in the American Journal
of Human Genetics (Billings 1988). Similar appeals were reprinted in newsletters
of organizations of individuals with genetic conditions, such as associations
for persons with Friedreich ataxia, Charcot-Marie-Tooth disease (CMT),
and muscular dystrophy.
Many responses included supporting documentation. Each described incident
was reviewed independently by two of the authors (P.R.B. and M.A.K.), and
a decision was reached as to whether it met the standard for inclusion
in our study. This preliminary investigation was closed after receiving
responses for 7 months.
The most common reasons for excluding responses in this study were that
(1) the differential treatment was based on a physical variation or disability
(for example, individuals with Tumer syndrome who were discriminated against
in employment because of short stature), (2) there was a lack of evidence
that the differential treatment arose from the hereditary nature of the
condition, and (3) there was inadequate information submitted to determine
whether discrimination had occurred.
RESULTS AND DISCUSSION
Of the 42 responses received, 13 (31%) were excluded from further study because of failure to meet our strict criteria for genetic discrimination or because insufficient information was provided to enable an accurate assessment. The remaining 29 responses came from all regions of the United States and Canada. A variety of genetic conditions were represented in the study group, including Huntington disease [a late-onset disease that causes degeneration of mental and motor functioning], Friedreich ataxia [a disease of the spinal cord that leads to reduced muscular coordination], CMT [Charcot-Marie-Tooth disease, a neuromuscular condition], hemochromatosis [a disease characterized by excessive iron intake], phenylketonuria (PKU)[a biochemical disorder that causes brain damage], and others. Most of the responses were elicited by the advertisement reprinted in newsletters.
The 29 evaluated responses described 41 separate incidents of possible
discrimination. Of these 41 incidents all but two involved insurance or
employment. Thirty-two incidents involved insurance (applications or coverage
changes for health, life, disability, mortgage, and auto insurance), and
seven involved employment (hiring, termination, promotion, and transfer).
The respondents described difficulties in obtaining desired insurance coverage,
in finding or retaining employment, and in interactions with adoption agencies.
Problems with insurance companies rose when individuals altered existing
policies because of relocations or changes of employers. New, renewed,
or upgraded policies were frequently unobtainable even if individuals labeled
with genetic conditions were asymptomatic. Assessment of the natural history
of the genetic condition or evaluation of the fitness of the individual
by physicians had little or no influence on the adverse outcomes presented
by the respondents. Because of fear of discrimination, several respondents
reported that they withheld or "forgot" to mention potentially
important medical or family history information to physicians, employers
or insurers. Others reported that their insurance agents suggested that
they give incomplete or dishonest information on insurance application
forms.
The responses excerpted below illustrate several themes that appeared repeatedly
in the data. These themes can be grouped into three categories: (1) "The
Asymptomatic Ill," (2) "The Problem of Variability," and
(3) "The At-Risk: to Test or Not to Test? Dilemma." While the
incidents suggest discrimination by specific institutions such as insurance
companies, the cases and types of genetic discrimination described below
may reflect the attitudes and practices of an array of business, social,
and political institutions.
THE ASYMPTOMATIC ILL
Many individuals identified as having a hereditary condition are healthy. Some have undergone testing only because other affected family members have been identified with a genetic condition. As the number of genetic tests increases, and [the tests] are widely applied, an increasing number of individuals will discover that they harbor a disease-associated gene but have no identifiable clinical illness.
A respondent from a family with hereditary hemochromatosis wrote: "In
1973, at age 27 and 1/2, I ,was diagnosed as having excessive iron storage
and was put on a regime of phlebotomies ....
"[After several years] I have never had the slightest symptom, in part because early detection [and appropriate treatment] of iron overload in my case avoided damage ....
"[After failing to get insurance because of my hemochromatosis] I
have supplied doctor's testimonies to no avail. I might as well have AIDS.
Even though I have proven that I prevented health problems by early detection
and prophylaxis, they condemn me to the same category as lost causes. I
run 10 Km races, etc. I am not a basket case, and will not be one, ever,
because of iron overload."
With respect to a second case, a physician reported that "an individual was found to have Gaucher Disease. His brother was screened and the results were consistent with unaffected carrier status [heterozygote] The brother applied for a governmental job and included the history of his testing in the application. He was denied the job because of his being a 'carrier, like a sickle cell'."
With respect to a third case, a clinical geneticist caring for individuals
with PKU wrote: "[Name withheld] is an 8 year old girl who was diagnosed
as having PKU at 14 days of age through the newborn screening program A
low phenylalanine diet was instituted at that time ....
"Growth and development have been completely normal. Height, weight,
and head circumference all follow the 25th percentile. Routine developmental
assessments done at 26 weeks, 53 weeks, and 54 months revealed skills solidly
appropriate for age, and in many instances skills were above age-expected
levels. The child continues to be developmentally normal and be healthy.
The circumstances of the discrimination that this child has experienced
involve rejection for medical insurance. She was covered by the company
that provided group insurance for her father's previous employer. However,
when he changed jobs recently, he was told that his daughter was considered
to be a high risk patient because of her diagnosis, and therefore ineligible
for insurance coverage under their group plan. She is currently being covered
at the expense of her family, but this is a temporary solution at best.
The family has written to the agency that administers the group insurance
plan to obtain details of the decision to deny coverage and also plans
to write to the chairman of the large corporation for which the father
works. All information will also be submitted to the [state] insurance
commissioner."
COMMENT
The first case illustrates both the promise and the burden of genetic testing. It was through genetic testing that this individual was diagnosed and successfully treated. Yet, because of his test results, he has been stigmatized and denied insurance as if he were severely ill. Similarly, the individual described in the second case was denied employment because of his genotype, despite the fact that he was asymptomatic and a heterozygote for an autosomal recessive condition.
The third case illustrates both the benefits of genetic testing in enabling
the early detection and successful treatment of many children with PKU
and constraints that can be imposed by genetic labeling. The cost of a
phenylalanine-restricted diet, an effective treatment for PKU, is high.
Without insurance, it is possible that the family would not be able to
afford treatment for their child, with the consequent risk of developmental
delays and permanent impairment. The family's life is restricted by the
necessity for the father to maintain employment in the same state and at
the same job in order to have access to insurance. Thus, the child's diagnosis
has a major impact on the geographic and job mobility of other family members.
These constraints, in turn, could cause economic or other potentially significant
limitations.
By preparing to take their situation to a state agency, this family demonstrated
"self-advocacy" abilities. The poor, the uneducated, foreign
nationals, or those with fears about their job security may not be as willing
or able to negotiate the complexities of our legal and regulatory systems
in order to secure their rights.
All three cases illustrate instances of discrimination against individuals
who are completely asymptomatic; their only "abnormality" lies
in their genotypes. As large numbers of individuals submit to or are coerced
into testing in order to obtain employment or insurance coverage, a new
social class and category- the "asymptomatic ill"--may be constructed.
Although they are healthy, persons in this new group may find that they
are treated as if they were disabled or chronically ill by various institutions
of our society (Marx and Sherizen 1986; Nelkin and Tancredi, 1989).
All of the cases suggest that access to jobs, insurance, or social entitlements
may be limited because of genetic discrimination. Stigmatization and frustration
("I might as well have AIDS") may accompany the test result.
The financial and legal burdens of maintaining a reasonable standard of
living and basic entitlements as a result of genetic discrimination could
be significant.
THE PROBLEM OF VARIABILITY
Several responses described situations in which people were victimized because of a misunderstanding of the clinical variability of many genetic conditions. One respondent with CMT, a nonfatal, clinically variable, and genetically heterogeneous neuromuscular condition, wrote: "I have been rejected for life insurance many times, but only once was CMT cited [explicitly] as the reason .... [I appealed, informing the insurance company] that people do not die from CMT and that they had declared me automatically eligible for accidental death insurance--the one risk that can be assumed might be greater for people with CMT.... [The insurance company's reply] repeated the statement that CMT is the reason for rejecting my application.
"In 1979 my daughter was denied employment by the [name omitted] Company
because she has CMT even though the case is not really noticeable. She
had indicated on the form that she had CMT and the examiner asked her what
it stood for; then, he looked it up in a medical book and denied her a
job which had been offered to her by the recruiter."
Another respondent stated: "... My husband has a genetic disorder,
Charcot-Marie-Tooth. We have just been turned down for automobile insurance
with [name omitted] because of his disease. I have just recently sent them
a letter from my husband's doctor . . . explaining that my husband is a
far better driver than anyone I know .... My husband has had NO accidents,
or traffic violations since he has been driving from the age of seventeen
[twenty years of driving] ."
COMMENT
In these examples, involving CMT, the individual does suffer from a disease, but the symptoms are mild. The decisions regarding life and automobile insurance, and employment, were based solely on a diagnostic label, without regard to the severity of the condition for each individual. In these and other cases, having a particular genotype is equated with the presence of a severe illness and the lack of effective treatments. This evaluation of genetic conditions illustrates a lack of understanding of the concepts of incomplete genetic penetrance, variable expressivity and genetic heterogeneity. In many cases, the worst possible scenario seems to be the standard used for policy decisions regarding at-risk individuals. Yet wide variation in clinical manifestations of a gene-associated disorder--individuality--is common. As highlighted in these examples. an individual may suffer serious consequences as a result of the inaccurate and unfair simplification of genetic conditions.
THE AT-RISK: TO TEST OR NOT TO TEST? DILEMMA
The third category includes those individuals who are currently healthy but who may be at risk for a genetic disease. Discrimination may ensue as a result of a decision to forego testing and thereby not determine whether they (or their future children) will develop the disease. Discrimination may also occur if they opt for such testing and the results reveal a genotype associated with disease.
A respondent wrote: "I am at risk for Huntington Disease [age 31].
After many years of consideration, my husband and I decided not to bear
our own children, but rather to adopt children, so as not to take the chance
of passing on the Huntington gene.
"In 1987 we began investigating adoption. We encountered restrictions
due to religion and availability of infants, but were finally invited to
make application with [name and location of agency omitted]. We began our
counseling process and our home visits, at which point the issue of my
being at risk was discussed (I had disclosed in my original application
the possibility of my developing the disease and why we had chosen adoption).
Before completion of our home study, we were asked to withdraw our application,
because of the Huntington Disease situation ....
"We understand the fight to choose the BEST 50 couples out of some
500 applicants per year for placement. Availability of children is incredibly
limited. And yet, should I be judged by a disease that I am only at risk
for and that may not develop for some years to come? Does this make me
different than anyone with diabetes or cancer, for example, in their ancestry?"
Another couple at risk for Huntington Disease sent a letter they received from an adoption agency: "We have decided, in your situation, not to proceed with your application because there is a fifty-fifty chance of your getting Huntington Disease. Though you would be likely to get the disease around the age of fifty, it could be sooner. You would not receive a child from us, if we could proceed with your application, for several years, and therefore we would be risking the likelihood of not having you available to the child until he/she has reached adulthood. We feel that a fifty-fifty chance of getting a disease as serious as Huntington Disease is too great a risk, for our purposes and circumstances."
In a third case, a physician informed us that "a family with a child
who has cystic fibrosis received health care through an HMO. When a second
pregnancy occurred, prenatal diagnosis using DNA analysis was instituted.
Fetal DNA tested positively for two copies of a mutation associated with
cystic fibrosis: Nevertheless, the family decided to proceed with pregnancy.
After disclosure of the test result, the HMO considered withdrawal of our
financial limitations on the health care coverage for the pregnancy, postpartum
and pediatric care, as well as for the already affected child. Threats
of legal action were required before this situation was resolved."
COMMENT
In the first two cases, the adoption agencies' attitude illustrates how certain conditions categorized a "genetic" are viewed as special and handled differently in terms of social decision making. The use o genetic tests to ascertain the genotype in such at-risk individuals will not necessarily lessen the chances o subsequent discrimination, since a positive test will not be an infallible predictor of the burden a genetic trait may place on an individual, nor does it predict the abilities of affected individuals as parents or the qualities of a potential home.
These incidents also illustrate a large eugenic prejudice--the myth of
genetic perfection (Billings 1989; Suzuki and Knudtson 1989). The agencies
assume that the best possible family is the one least likely to face medical
adversity- the "perfect" family with a disease-free genome. Unfortunately,
all families are at risk. The comparison made by one respondent, of being
at risk for Huntington disease with susceptibility to diabetes or cancer,
highlights a prejudice-that the chance of developing a genetic condition
is perceived differently from a similar probability of contracting an illness
not produced primarily by a gene.
The third case raises several social and ethical problems. The family was
faced with the possibility that bearing a child with a certain genotype
might reduce their access to necessary health care benefits. These circumstances
constitute a strong incentive for aborting a fetus on the basis of its
genotype, a practice that might be interpreted as a form of eugenics. Finally,
the couple was forced to threaten legal action to avoid the abortion and
loss of benefits, an alternative not available to people who cannot afford
an attorney. In addition, pressuring a couple to have an abortion seems
to infringe on a right many believe to be fundamental, the right to bear
children.
CONCLUSIONS
This pilot study identifies multiple facets of genetic discrimination. It does not document the full range of the prejudices faced by individuals with genetic diagnoses, nor does it establish the prevalence of these attitudes or discriminatory practices. A comprehensive study of the significance and varieties of genetic discrimination is critical to design strategies to ensure the ethical and appropriate use of genetic testing in the future. The need for such studies is underscored by the large number of genetic tests currently performed each year. In addition, powerful business interests support larger applications of genetic techniques because of the revenues that tests and kits generate directly and indirectly.
The dominant theme noted in the responses in this study is that genetic
conditions are regarded by many social institutions as extremely serious,
disabling, or even lethal conditions without regard to the fact that many
individuals with "abnormal" genotypes will either be perfectly
healthy, have medical conditions which can be controlled by treatment,
or experience only mild forms of a disease. As a result of this misconception,
decisions by such institutions as insurance companies and employers are
made solely on the basis of an associated diagnostic label rather than
on the actual health status of the individual or family. The appropriate
use of genetic testing information to restrict or limit access to public
entitlements such as health care or employment has not been established
and may not exist. The cost of such labeling is magnified by the fact that
errors in testing and interpretation do occur.
Once labeled (possibly erroneously), an individual may suffer serious consequences,
as highlighted in the examples. These include the inability to get a job,
health insurance, or life insurance, being unable to change jobs or move
to a different state because of the possibility of losing insurance, and
not being allowed to adopt a child.
Furthermore, information related to genetic labeling may enter large-scale
data banks now used to store personal health-related information. Individuals'
health profiles, which can include genetic conditions, are available privately
and are generated in a manner similar to the ubiquitous credit checks encountered
in business. Breaches of confidentiality and unauthorized uses of this
information may arise (Dezell 1984; Norton 1989; Billings 1990; DeGorgey
1990). Genetic data on certain groups within our society are already being
stored by governmental agencies (DeGorgey 1990).
These incidents suggest that there are very important nonmedical reasons
why individuals may wish to avoid genetic testing. It is clear that the
option not to know is being exercised now. Many persons at risk for Huntington
disease, for example, have refused to be tested (Meissen et al. 1988; Brandt
et al. 1989). The choice to refuse testing will become more difficult if
such testing is required for employment, to obtain affordable medical care,
or to obtain or renew health or life insurance. The personal decision to
undergo genetic testing certainly requires accurate information about the
clinical predictive value of genetic tests (data which may not be available
currently), but the widespread utilization of genetic testing as a prerequisite
for obtaining social entitlements may also influence an individual's right
to choose not to know his or her genetic predispositions.
Various constraints exist to prevent or limit abuses made possible by access
to genetic information. These include, for example, laws affecting privacy
and civil rights (Russell-Einhom and Rowe 1989; Natowicz et al. 1992).
In addition, limitations exist on the uncontrolled expansion of genetic
testing and screening. These include opposition by individuals and interest
groups (such as labor unions and disability advocates) sensitized by the
dismal history of eugenics movements and suspicious of genetic and scientific
incursions into normal daily life, economic constraints (i.e., the poor
profit yield of some tests), and state and federal regulations regarding
testing and screening.
Nevertheless, it is clear that unfair and discriminatory uses of genetic
data already occur under current conditions. Enacted state and federal
laws are inadequate to prevent some forms of genetic discrimination, particularly
that due to the health insurance industry (this report; Natowicz et al.
1992). implementation of carefully considered legislation regarding, for
example, the privacy of genetic information and the imposition of meaningful
penalties on social institutions such as insurers that are found guilty
of genetic discrimination are mechanisms to address aspects of genetic
discrimination. Consideration of alternative medical care systems is another
potential approach toward solving some of these issues. Any approach should
include the reaching of a broad-based public consensus on the appropriate
use of genetic tests. Without further changes in social attitudes, legal
protection, and/or changes in the prevailing American health care system,
many healthy and potentially productive members of our society will suffer
genetic discrimination.
ACKNOWLEDGMENTS
The authors thank members of the Genetic Screening Study Group for stimulating this study and for thoughtful criticisms. We also thank Phil Bereano, Sherri Broder, Parris Burd, Wylie Burke, Marsha Lanes, Amo Motulsky, and Paul Slovic for contributing information or helpful comments and Denise Brcscia for her assistance in the preparation of this manuscript.
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