On 23 April 2008, the United States Senate moved to pass ...
Using the results from genetic tests: what are the consequences for
Genetic tests can lead to a better treatment of diseases, but who should
get hold of the results? Should insurance companies or employers get
access to the information?
How can abuse be avoided? How can a legal environment be created that
secures the privacy of the results?
HSE Horizon Scanning Intelligence Group - Genetic Testing in the
Genetic technologies are increasing at a rapid rate along with our knowledge of the
interactions between our genes and disease. There are currently genetic tests for more
than 1300 diseases and genetic testing is continually getting cheaper and faster. Now
scientists are researching the sources of more complex disorders involving multiple genes
e.g. heart disease and Alzheimer’s disease. Recently the largest ever study of the genetics
behind common diseases such as diabetes and rheumatoid arthritis was published.
Researchers suggest that genetic tests for some of these diseases could be available by
2010. Huge research projects such as the International HapMap Project and UK Biobank
are providing key resources for researchers in finding genes that affect health and disease
and in understanding the complex interactions between genes, health, lifestyle and
environmental factors. Additionally gene chips are available that will allow scientists to
search for the genetic causes of disease much more quickly.
Genetic tests can:
• identify an individual’s genetic make-up (genotype); and
• detect genetic damage that occurs over time
The results can reveal whether a person:
• has a genetic disorder e.g. Huntington’s disease;
• is at an increased risk of developing a common disorder e.g. cancer; or
• is at an increased risk of developing a condition e.g. asthma when exposed to
Implications for health and safety
Genetic testing has the potential to offer many benefits in general health, for example in
identifying markers for certain disease so that people can be forewarned and appropriate
action taken. In the workplace it could be used to screen existing staff for certain jobs, or
before employment to select or exclude applicants on the basis of their susceptibility to
certain diseases or substances. This could mean that people prone, say, to asthma can be
kept away asthmagens. Testing could also be used as a diagnostic tool to detect work-
related genetic damage.
However, the downside could be that employers think that recruiting ‘non-susceptible’
people means they can relax their controls. People could also be screened for
susceptibility to non-work-related conditions for economic reasons (i.e. likely to have
less time off sick).
The difficulty, apart from the considerable ethical aspects, is that genetic screening is in
most cases not a simple yes/no test – it is an indicator of risk. The possession of a certain
genotype that predisposes someone to a condition does not necessarily mean that they
will definitely get it, or when they will get it, if they do. Conversely, the absence of
particular genes linked with a condition doesn’t necessarily mean that someone won’t
develop a serious condition in the future. This could mean that taking any employment
decisions based on genetic information could be unreliable.
We have not found any evidence that employers are currently carrying out genetic testing
in Britain (with the exception of the MoD for aircrew training) and the Human Genetics
Commission (HGC) has concluded that employee genetic testing is not currently
occurring in the workplace, but they admit that their evidence base in this area is poor.
Even if employers do not themselves seek to introduce genetic testing, it could be that
insurers influence the situation through premiums. British insurers are observing a
voluntary moratorium until 2011 on genetic testing for life insurance (apart from high
value policies), but thereafter there is the potential for increasing use of testing, including
in the employment arena.
In 2004 the Health and Safety Commission stated that it considered it unacceptable to
exclude or remove a person from the workplace because he or she might develop a
genetic condition. While there are restrictions in place on the taking of DNA without
people’s knowledge, and voluntary codes of disclosure on testing, there is no UK law
stopping employers from carrying out and acting upon genetic screening. At present UK
law does not cover a genetic abnormality which gives rise to a disability, if one has not
yet developed that disability.
On 23 April 2008, the United States Senate moved to pass legislation that will ban
discrimination on the basis of someone’s genetic details. Having made it through the
Senate, the Genetic Information Non-discrimination Act (GINA) now needs to be
sanctioned by the House of Representatives, and if this happens, GINA will become
law, prohibiting employers, unions and insurers from discriminating against
someone via genetic information. This is a subject that is hotly debated, both across
the Atlantic and here in the UK. So, what are the arguments surrounding the issue
of genetic discrimination and, as the US seeks to safeguard against it, where does the
UK stand on the matter?
While the use of genetic test results by the insurance industry could soon be
forbidden in the US, the situation in the UK is slightly different. In April 2001, both
the UK government and the Association of British Insurers (ABI) announced the
inauguration of a five-year moratorium on the general use of genetic test results. It
came into effect in November of that year and means that a person should not be
prevented from obtaining health and protection cover on the basis of their
predictive genetic test results. The only time this rule does not apply is when the
insurance cover being sought exceeds a specified amount and the test for a genetic
disease is recognised by the Genetics and Insurance Committee (GIAC) (currently
only Huntingdon’s disease falls into this category).
The moratorium was a response to widespread concerns that insurance companies
were using the results of predictive genetic tests when deciding whether or not to
grant an individual insurance cover. Alistair Kent, the director of the Genetic
Interest Group (GIG), explained: "A lot of people felt that if insurers were allowed
access to information about their genetic make-up, then they would potentially be
denied insurance or that they would be expected to pay a significant increased
premium in order to get the cover."
Such concerns have been quantified by statistical research. In 2005, New Scientist
reported the results of the most extensive survey on possible discrimination. It
revealed that one in 12 people who have taken a genetic test believe that they have
been disadvantaged as a result, and cited the denial of life insurance as an example.
Moreover, a Mori poll conducted on behalf of the Human Genetics Commission
(HGC) found that only eight per cent of people are comfortable with insurers having
access to their test results.
In the US, it is hoped that if GINA is made law, it will serve to reassure those who
have been reluctant to take a predictive genetic test for fear of discrimination.
Genetic testing, while inevitably attracting some criticism, can prove significantly
beneficial in some cases. According to a report by Market Watch, genetic tests were
initially used to diagnose problems in foetuses and to screen newborn babies for
inherited diseases. As technology has developed however, the scope of genetic testing
has widened and there is purported to be around 1,500 genetic tests now available,
including those which can identify genes that make a patient susceptible to cancer.
Campaigners have welcomed the news that GINA has been passed by the Senate.
Kathy Hudson, director of the Genetics and Public Policy Centre, commented:
"After a very long wait, Americans can now be confident that their genetic
information cannot be used by health insurers or employers in harmful or hurtful
With this in mind, should the move by the US to legislate against the industry
accessing these results be emulated here? The UK insurance industry has operated
under the temporary suspension on the use of predictive genetic test results for life
insurance policies worth £500,000 or less [lower limits for critical illness insurance
and income protection insurance]since the moratorium was introduced in 2001 and
will continue to do so until it is reviewed in 2011. As it stands, the moratorium
covers 97 per cent of the policies on offer.
Mr Kent doesn't think that following in America's footsteps is necessary. He is
pleased with the way in which this non-legislative measure is working thus far,
remarking: "At the moment, the moratorium is proving very effective." Similarly,
those within the insurance industry itself feel that it is beneficial. Jonathan French,
a spokesperson for the ABI, doesn’t believe that the moratorium needs to be lifted,
or that it has had an adverse impact on the industry. "The industry is very content
with the moratorium as it is," he said, and added that when it is reviewed this year,
he fully expects it to be extended.
GIG's director, Alistair Kent, agrees with the ABI’s Jonathan French in his
prediction that the moratorium will be extended, and welcomes such an outcome if
it were to arise. Moreover, he argues that essentially the results which are obtained
via a genetic test are mostly irrelevant to the insurer. "Most genetic tests don’t
actually give a lot of significant information that insurers can make any use of," he
explained. "The genetic component of most diseases is a relatively small factor in
determining whether or not you are going to get it."
The moratorium is currently undergoing review, the results of which will be
published later this year. When it comes to evaluating the success of the
moratorium, it is difficult to state a case against it as it seems premature to meddle
in something that thus far, seems to be doing the job. "Denying insurers access to
genetic test results hasn’t led to the collapse of the insurance industry or a huge
upset in terms of premium prices or anything like that," Alistair Kent explained. "I
don’t think there is an overwhelming pressure to change the status quo."
21 December 2009
Beyond genetic discrimination. Problems and perspectives of a contested
4.1. “From the cradle” – The rebirth of genetic essentialism as anti
The first case was recently taken up by various media and found a lot of attention inside
and outside Germany. In August 2003, the State of Hessen refused to employ a teacher as
a civil servant after she had completed her trial period. The enquiry by the officially
appointed occupational physician had revealed that the young woman’s father suffered
from Huntington’s Disease. The report came to the conclusion that at the present point in
time the applicant’s health was suitable to enable her to take up the job, but she was
barred from becoming a civil servant on the ground that there was an increased
probability that she would fall ill in the foreseeable future and become enduringly unfit to
discharge her duties. The applicant lodged an appeal against this decision before the
Administrative Court in Darmstadt, which ruled mainly in her favour and instructed the
State of Hessen to immediately appoint her to government service. In the court’s opinion,
the school authorities had wrongly assessed the state of her health as an applicant, as they
had claimed that the 50-percent risk of illness meant there was a “most strong
probability” she would enduringly not be able to discharge her duties. The school board
declined to contest the decision and has since employed the woman in question under a
government service contract.
At the same time, another case was before the courts but attracted far less public
attention. Again in Hessen, a young man was dismissed while still on probation for
government service, as in the opinion of his employers given his weight of 120 kg his
health was not suited for a career in general administration. Here again the applicant took
the matter before the courts. However, in its ruling the Frankfurt Administrative Court
confirmed that the dismissal was legal as the employer was permitted to preempt the risk
of having to foot the bill for later enduring damage to the man’s health. In other words,
although the applicant was not yet ill and it is completely uncertain whether and in what
way his elevated body weight might impair his health in the future he was treated in legal
terms as though he were already incapable of pursuing his duties.
These examples show that the distinction between genetic and non-genetic information
cannot serve as the basis for legal differentiation. First, it is not intelligible why, for
example, the use of biochemical methods that allow making inferences on a person’s
genetic disposition is permissible for discriminatory purposes, while DNA tests, that
reach the same results, are forbidden. It would seem not only fairly impractical but also
unfair to prohibit an insurance company from evaluating a genetic analysis for a complex
disease, while the results of a non-genetic test for the same illness may be relied on. This
methodology essentially creates a legal situation in which people with positive genetic
diagnoses receive more protection against discrimination and data abuse than those
whose findings are based on nongenetic methods: “Would the law mean that the records
of a person with a presymptomatic heart condition who was given a genetic test for some
mutant gene associated with heart disease would be covered by anti-discrimination
provisions, but not the records of a person with the same condition whose physician order
only nongenetic tests?”
Second, it remains unclear why institutional actors such as insurance companies or
employers should be forbidden from using a source of genetic information (genetic
screening) although they are allowed to draw on other forms of genetic knowledge. For
example, according to a draft by the German Health Ministry for a bill on genetic
diagnostics, an insurance company would be prohibited from demanding that a woman
who a BRCA test shows as positive for breast cancer pay a higher insurance premium,
whereas this is permissible with regard to a woman who has preferred not to undergo
genetic screening but in whose family several women have already had breast cancer.
This asymmetric decision-making principle not only violates the principle of fairness, but
also means we must fear that such a regulation will compel people to opt for genetic
analyses even if they did not originally want to – for example, in order to get insurance
policies (at standard conditions).
Third, the increasing discovery of genetic factors for the genesis of illnesses will in future
make it ever harder to draw a line between genetic and non-genetic conditions. With
reference to the above-mentioned case, a series of research findings could be cited, for
example, that point to a genetic component in obesity. What would the judgment be if an
applicant could credibly claim that a specific genetic disposition is (co-) responsible for
his increased body weight? Would we then be confronted by a case of genetic
discrimination and would need to specially protect those concerned from it?
Genomics, Society and Policy
2005, Vol.1, No.3, pp.22–40.
US woman accuses employer of genetic discrimination after breast
Bionews | 04 May 2010
A Connecticut woman who had a voluntary double mastectomy after genetic testing is
alleging her employer wrongfully terminated her job after learning she carried a gene
implicated in breast cancer.
Pamela Fink is accusing MXenergy, a natural gas and electricity provider, of phasing her
out of employment after she disclosed that she had tested positive for the BRCA2 genetic
mutation, predisposing her to breast and ovarian cancer.
She took leave to undergo a voluntary double mastectomy as a preventative procedure,
but the company terminated her employment six weeks after her return from the second
surgery 'because it regarded me to be an 'individual with a disability'', Fink claims in her
complaint, which is filed with the Connecticut state Commission on Human Rights and
federal Equal Employment Opportunity Commission (EEOC).
A spokesman for MXenergy emphatically denied the allegations and will not comment
The allegation has sparked public interest in the US because, according to legal experts, it
is one of only a few to invoke breach of the new federal Genetic Information
Nondiscrimination Act 2008 (GINA) which prohibits employers and health insurers from
considering an individual's genetic test results or genetic information in reaching
Fink explained that the reason she has gone public with this complaint is because '…I
want people to know and feel comfortable… getting these tests and doing what they can
to remain healthy'. Her lawyer, Gary Phelan, said that Fink's case sends an important
message to employers that 'you can't use someone's genetic history against them'.
Fink and her two sisters tested positive as carriers of the BRCA2 mutation in 2004. Both
her sisters developed breast cancer, and following several biopsies and false alarms,
Fink underwent the double mastectomy.
Fink worked for MXenergy for almost four years and had glowing performance reviews
up until she disclosed her genetic tests. Following this, she received negative
performance reviews and claims that her responsibilities were increasingly removed, until
her employment was ultimately terminated in March.
Phelan said it's common for employers to claim a worker is performing poorly when they
wish to terminate the employee for some other reason.
The EECO will investigate the complaint and try to negotiate settlement over six months.
If it does not settle, Phelan has stated that Fink will apply for EEOC approval to pursue
the claim in court.
Additional links: http://www.hgc.gov.uk/Client/news_item.asp?NewsId=136
Suggested search terms: “genetic screening” “genetic testing + discrimination”