On 23 April 2008, the United States Senate moved to pass ...


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On 23 April 2008, the United States Senate moved to pass ...

  1. 1. Committee 2 Using the results from genetic tests: what are the consequences for society? 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 Workplace August 2007 Background 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
  2. 2. • is at an increased risk of developing a condition e.g. asthma when exposed to hazardous chemicals/radiation. 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. http://www.hse.gov.uk/horizons/genetictesting.pdf
  3. 3. 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.
  4. 4. 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 ways." 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 http://www.lloyds.com/News_Centre/Features_from_Lloyds/Genetic_testing_Where _next_for_the_UK_22052008.htm
  5. 5. Beyond genetic discrimination. Problems and perspectives of a contested notion THOMAS LEMKE 4.1. “From the cradle” – The rebirth of genetic essentialism as anti discrimination policy 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
  6. 6. 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 cancer test 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
  7. 7. 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 further. 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 decisions. 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. http://www.bionews.org.uk/page_59418.asp Additional links: http://www.hgc.gov.uk/Client/news_item.asp?NewsId=136 http://www.ukgtn.nhs.uk/gtn/Home Suggested search terms: “genetic screening” “genetic testing + discrimination”