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  1. 1. Kate Hepher Discrimination Law Review Team Women and Equalities Unit Department for Communities and Local Government Ashdown House 123 Victoria Street London SW1E 6DE 14 September 2007 Dear Ms Hepher Human Genetics Commission response to the Discrimination Law Review consultation, A Framework for Fairness: Proposals for a Single Equality Bill for Great Britain The Human Genetics Commission (HGC) is grateful for the opportunity to contribute to the Discrimination Law Review and to comment on the proposals for a Single Equality Act. We are especially grateful for the grant of an extension to the consultation period which allowed us to consider this response carefully at our plenary meeting on 12 September. A podcast of this discussion will be available on HGC website.1 The role of the HGC is to advise Government on new developments in human genetics and their influence on individual lives, with a particular focus on social, ethical and legal implications. Understanding of genetics and the technologies used to obtain and process genetic information are developing areas; the opportunities for harm will undoubtedly increase in measure with the opportunities for benefit to which they give rise. We have consistently advised that provision needs to be made for the management of these harms and benefits before they are realised. As a forward looking Commission we are encouraged by the spirit of Ruth Kelly’s assertion in the introduction to the consultation document (A framework for Fairness: Proposals for a Single Equality Bill for Great Britain, p.7.) that “we want our institutions to work in a way which prevents unfairness happening in the first place, rather than addressing it after the event”. An important theme of the Commission’s work since its establishment in 1999 has been concerned with the issue of genetics and discrimination, and the Commission maintains a dedicated Genetic Discrimination Monitoring Group which meets regularly to examine, discuss and report on the many aspects of this issue. In particular the Commission’s work, along with that of the Genetics and Insurance Committee (GAIC), has led to the establishment and maintenance of the Concordat and Moratorium on genetics and 1 www.hgc.gov.uk. The podcasts can be found under the appropriate pleanary meeting by following the following path: HGC home>our work>plenary meetings>2007>12 September 2007. PAGE 1
  2. 2. insurance by which insurers have agreed not to use information from the results of genetic tests in calculating insurance premiums (except in certain very high-value cases where the tests are approved by GAIC2). The Commission has also carried out significant work in relation to genetics and employment, working with the Information Commissioner’s Office and the Faculty of Occupational Medicine to ensure that information from genetic tests is not used in a discriminatory manner in an employment context. The Commission has also supported the initiatives in the 2003 Genetics White Paper Our Inheritance, Our Future, realising the potential of genetics in the NHS to increase knowledge about, and access to, effective genetic services for those affected by, or at risk of, genetic disease. Additionally, many of the Commission’s stakeholders, including many members of the Commission’s Consultative Panel, have a strong interest in genetic disease and discrimination, either as a result of being affected by a disability, being diagnosed as having a genetic variation that might lead or predispose them to being affected, or as carers or family members of those affected by genetic disease. The unique contribution of the Consultative panel has deepened the Commission’s understanding of the threats that may exist to the rights and interests of people affected by genetic conditions and the Commission has worked consistently to ensure that these rights and interests are properly recognised. In view of its remit, the HGC’s response will be restricted to addressing the need to extend the grounds on which discrimination is prohibited to include certain genetic characteristics. In particular, the response will address the question at paragraph 8.31 of the consultation document, namely: “Do you agree that there is no current justification for legislating to prohibit genetic predisposition discrimination?” The arguments put forward in the consultation document We congratulate the Department of Communities and Local Government on producing a thoughtful, well-written and accessible consultation document. The section of Chapter 8 of Part 3 headed ‘Genetic Predisposition’ contains three objections to the introduction of a specific prohibition of discrimination on the grounds of genetic predisposition, namely: (i) that there are no actual harms to be addressed, (ii) that legislating might produce collateral harms, and (iii) that there are more appropriate ways to address possible genetic discrimination than through legislation. We will comment on these in turn. (i) Evidence of genetic discrimination The first objection points to an absence of evidence that genetic discrimination is a “real problem experienced by individuals who share a particular characteristic” (para.8.1). We have looked for evidence in three areas: 2 Currently only tests for Huntington’s disease in relation to life insurance policies valued in excess of £500,000. PAGE 2
  3. 3. • where people may have been required to disclose sensitive personal information about family history or about genetic tests and the results of those tests; • where people may have been coerced (or induced or pressured to an unacceptable degree) to take genetic tests; and • where people may have been discouraged from taking medically relevant tests, or participating in potentially beneficial research, from fear that the results of genetic tests may be used to their disadvantage. On two occasions, we have canvassed our consultative panel of people affected (either personally, through their family, or as carers) by genetic conditions. Although this is a limited sample (<100 people) there is already evidence of discrimination on genetic grounds (see, for example, Appendix, part 1, bullets 1 to 3). We have also found evidence that discriminatory treatment also arises from a confused perception of genetic conditions or from lack of accurate information (see Appendix, part 1, fourth bullet). However evidence of actual harms resulting from discrimination on the grounds of genetics has not been collected systematically. In July 2007, following a request from the HGC Discrimination Monitoring Group, the Genetic Interest Group (GIG) sent an email questionnaire to its member organisations (all of which are patient support groups for those affected by genetic conditions). Recipients were asked to forward the questionnaire to their members. The questionnaire sought to discover evidence of ‘unfair treatment’ and the responses reveal a number of cases of serious and distressing discrimination against those with genetic conditions.3 They also reveal a history of significant ignorance or misunderstanding of genetic conditions, particularly in the context of insurance underwriting (e.g. Appendix, part 1, sixth bullet) and more generally in social life (e.g. Appendix, part 1, seventh bullet) leading to stigmatisation and disadvantage of those affected. There is additional evidence from a variety of sources which suggests that fear of being disadvantaged might exert unwelcome influence on people’s decisions about taking genetic tests (see Appendix, part 2). Furthermore, the existence of, for example, the Concordat and Moratorium on Genetics and Insurance4 the Joint Statement of Concern Regarding Genetic Testing in the Workplace5 in the UK, and by the development of foreign and international legal instruments prohibiting genetic discrimination (see list at Appendix, part 4) also indicate that fears about how genetic information might be used to disadvantage individuals are taken seriously at the highest levels. We note, also, that jurisprudence is accumulating around genetic discrimination in other jurisdictions (see Appendix, part 3). We would draw attention to two further considerations regarding the requirement for evidence. Firstly, genetics is unlike other grounds on which discrimination may take place in that our knowledge about it, and the technologies related to it, are continually developing. The opportunities for genetic discrimination may therefore be expected to increase as knowledge of, and access to, genetic information increases in the medium term (for example, in the normal lifespan of a statute).6 The second point is that evidence of genetic discrimination is difficult to gather. Significant genetic conditions are 3 The full findings of the survey are available at on the Genetic Interest Group’s website (www.gig.org.uk) and for that reason we do not reproduce them here. 4 Available at: www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4105905 5 See www.genewatch.org/sub-555114 PAGE 3
  4. 4. relatively rare at present and both the rareness of the conditions and the sensitivity of information about them are likely to make those affected difficult to identify and reluctant to come forward. (ii) Legislating will not produce collateral harms We believe that discrimination on grounds of disability and discrimination on grounds of genetic traits that do not give rise to symptoms of disease are different in kind. The recommendations of our report Inside Information (referred to in para.8.28 of the consultation document) were that: • the Government should consider in detail the need for separate UK legislation to prevent genetic discrimination (para.6.41), and in view of this • existing disability discrimination legislation should not be amended to include discrimination on the grounds that someone has a presymptomatic genetic condition (para.6.31). Consistently with this position we agree with the view expressed in the consultation document that to include genetic predisposition discrimination within the scope of disability discrimination “would change the nature of disability discrimination and risk being seen as a dilution of disabled people’s rights” (Consultation, para.8.28). The context provided by a Single Equality Act provides a clear opportunity to resolve the dilemma, by treating genetic discrimination under a separate heading. Although a dilution of disability discrimination has arguably already occurred in extending protections to people diagnosed with cancer and HIV, the reasons for this are persuasive and easy to understand. We would argue, however, that there are equally good reasons to include groups of people with highly penetrant, late-onset genetic conditions (Huntington’s Disease being the obvious example, but also genetic predisposition to breast or colon cancers) and other serious genetic conditions. Whatever arrangements are arrived at, we would assert as a matter of principle that those diagnosed with serious genetic disorders should enjoy as much protection in law as those diagnosed presymptomatically as having serious diseases that are either acquired or that occur spontaneously. However, most of the genetic differences with which we are concerned are not highly penetrant, and some are not medically serious, yet we have evidence for their being used as the basis for discrimination, even when they occur merely in a person’s family history, without any other reason to expect that individual to be personally affected. Drawing the line between such cases and those that might justifiably be classed along with disabilities will be difficult or impossible, as other factors beside the nature of the condition itself – in particular the context in which the discrimination occurs – will combine to attenuate or intensify the effect of discriminatory treatment on an individual’s life. In our view it is far better to offer protection from discrimination on any genetic grounds than to try to establish arbitrary distinctions between those who are protected and those who are not or to draw up provisional lists of ‘protected conditions’. These approaches risk 6 This point is stressed in a recent International Labour Office Report entitled Equality at work: Tackling the challenges (paragraph175 ff.) which also cites cases of genetic discrimination in employment. The report is available at: www.ilo.org/global/What_we_do/Publications/Officialdocuments/lang--en/docName-- WCMS_082607/index.htm PAGE 4
  5. 5. reinstating discrimination amongst those with different genetic conditions which cannot be the aim of legislation. (iii) Legislation is a proportionate response We have detected a concern that neither the existence of current voluntary or time- limited arrangements, such as the insurance Concordat and Moratorium, nor confidence in the safeguards of ordinary moral conduct, may be sufficient to allay the fears identified under (i) above. A concern that we have heard repeatedly is the “test now, buy later” problem in relation to insurance. This would occur if people who have undergone tests that they would not have to disclose to insurers under the existing Moratorium find that, when they come to buy insurance in the future, they are required to reveal the results and their premiums are adjusted unfavourably as a consequence. We do not offer a view on whether this concern is well grounded or on whether, in fact, insurers ought to have access to this information. We note, however, that the purpose of the Moratorium was to allow time in which to gather evidence, reflect on this and develop views (we made a number of recommendations in Inside Information7) but that the work undertaken to date has not shown a clear way forward. If it is the case that, as the consultation document states (para.8.30), “there is a need to ensure that individuals are able to take medically recommended genetic tests secure in the knowledge that the results will not be used unfairly”, and if it is the case that this security of knowledge can not be provided by voluntary, or industry-led, arrangements, a statutory solution may be the most appropriate – because the most stable and effective -- way of providing the degree of reassurance required. We have given some thought to what the regulatory impact of this legislative solution might be. In addition to any initial costs of establishing regulatory capacity (for example, through the Commission for Equalities and Human Rights, Information Commissioner’s Office, or – in the case of insurance – the Genetics and Insurance Committee), consequential changes to internal policies, publications, etc., the ongoing burden is likely to be in proportion to the number of cases of alleged discrimination. In the case of genetic discrimination, this is likely to be very low, and limited by the incidence of relevant genetic conditions in the population. On the other hand, we consider that burden might be offset by collateral benefits. The existence of a statutory prohibition of genetic discrimination, which reduces fears of genetic information being used to disadvantage individuals, may, correspondingly, increase individuals’ willingness to share personal genetic information. This, in turn, could have a variety of benefits. Among these might be an uptake in genetic testing and research leading to early, effective healthcare interventions and the development of new therapies. Another benefit would be allowing insurers accurately to calculate risk in the light of information about the prevalence of a genetic trait in a risk pool, thereby assisting them to meet Financial Services Authority’s requirements to maintain a sufficient fund in reserve against the possibility of claims. In time, it may even contribute to the overall increase in understanding about genetics, driving out ignorance, prejudice and misinformation. The Commission’s view on genetic discrimination 7 See especially Chapter 7 ‘Personal Genetic information and Insurance’ PAGE 5
  6. 6. In thinking about genetic predisposition it is helpful to distinguish between those mutations which are predictive of serious, highly-penetrant disorders and those which merely point to increased risk, albeit one which, unlike many non-genetic risk factors, cannot be directly removed through healthcare interventions. Along with mutations that predispose people to disease, we also consider it important that a measure of protection is given to those who carry genetic mutations which make them strongly susceptible to environmental factors. We would wish, for example, employers to have a duty to make reasonable adjustments to ensure the health and safety of employees with such susceptibilities rather than denying them employment simply because they carry a certain genetic trait (see Appendix, part 2, fourth bullet). However, discrimination on genetic grounds does not arise only from the likelihood of future disease or disability. Many people suffer discrimination as a result of unfounded or irrational assumptions about them or about genetic characteristics they possess (or might possess). We have found some evidence of this in our research (see Appendix, part 1, fourth, sixth and seventh bullets). It is important that a prohibition of genetic discrimination covers all of these cases and is not restricted merely to cases involving overt disease or disability. As with other existing discrimination prohibitions, we believe that a statutory prohibition of genetic discrimination should be a qualified prohibition. However, we believe that careful consideration would need to be given to the way in which the prohibition is qualified. As a minimum, some requirement to demonstrate the reasonableness of an exception and its proportionality to some legitimate end would usefully shift the burden of justification to those who would treat individuals differently on genetic grounds. The requirement that any exception is reasonable and legitimate would also help to address the ignorance and prejudice that still obscures the positive value of genetic knowledge. The burden of justification would help to foreground the difference between significant and trivial genetic traits, and ensure that differential treatment is both morally acceptable and supported by evidence. We recognise that statutory measures would require oversight and regulation to ensure that this is the case, and we have referred above to the regulatory burden that we think this would be likely to impose. In most cases (for example in insurance, employment, forensic databases, healthcare provision) existing regulators or oversight bodies already exist; instances that do not fall within the remit of these sector-specific regulators we would see as falling naturally within the remit of the new Commission for Equalities and Human Rights. Finally, we wish to mention the special situation that currently obtains with regard to genetics and insurance. The Concordat and Moratorium, which is due to expire in 2011, imposes an artificial restriction on the use of information derived from DNA tests, although it does not cover genetic information which may be derived from other sources, (biochemical tests or family history, for example). It is likely that when the moratorium ends, insurers will wish to make use of information from DNA tests in their actuarial calculations. It is clear that there is a strong case that this would constitute reasonable grounds on which to make an exception from any prohibition of different treatment among individuals on genetic grounds. If this argument should prevail, we nevertheless believe it is important that consideration be given to further measures to avoid undesirable social consequences (such as the creation of a class of people who cannot get access to insurance). One purpose of the Concordat and Moratorium was to provide an opportunity to explore the likely consequences of this situation. Inside Information contained a number of recommendations for further research,8 although the limited work has been undertaken to date has not resulted in any clear way forward. We 8 See especially Chapter 7 ‘Personal Genetic information and Insurance’. PAGE 6
  7. 7. are committed to ensuring that these issues are properly considered between now and 2011 and we would see the conclusions of this work as informing the way in which exceptions to a prohibition on genetic discrimination may be justified in the context of insurance regulation thereafter. In the mean time, we do not see the continuation of the voluntary Concordat and Moratorium as being incompatible with the introduction of statutory prohibition on genetic discrimination through a Single Equality Bill. The Commission’s conclusions In conclusion, the Commission finds that: • Unfair discriminatory treatment of groups or individuals on grounds of genetic difference is unacceptable. • There is anecdotal evidence of genetic discrimination, which constitutes an adequate justification for legislating now to prohibit genetic discrimination; furthermore, there are reasons to believe that opportunities for genetic discrimination will increase. We agree with the approach outlined by Ruth Kelly in her introduction to the consultation that discrimination should be tackled pre-emptively “rather than addressing it after the event.” We recall, in this connection, that the existence of both gender and disability discrimination were significantly under-recognised prior to legislation owing to the fact that evidence had not been systematically collected. • As well as discriminatory treatment, there is evidence that the legitimate fear of future discrimination creates an undesirable context for – and exerts an undesirable influence on – choices made by individuals in the present, such as whether to take a medically relevant test or to participate in potentially beneficial research. • Whilst existing voluntary arrangements and Codes of Practice appear to secure a high level of compliance in some important contexts, legislation prohibiting discrimination on grounds of genetic difference is likely to be the most effective way of addressing individuals’ fears about future genetic discrimination that may impact on decisions they take now. • Whilst exceptions should be permitted to any prohibition of genetic discrimination, the grounds on which exceptions are made require careful consideration and the burden of justification should fall on those who would seek to treat individuals differently on grounds of genetic difference. We believe that there is precedent for such a model under current employment law, where it operates as a defence to a claim for indirect discrimination, and we understand that this works very successfully in this context. • Those who are presymptomatic for serious genetic conditions should be as well protected in law as those who are diagnosed with, but asymptomatic for, acquired or spontaneously occurring conditions such as cancers or HIV. Whilst it would be inappropriate to provide this protection via the existing Disability Discrimination Act 1995, we believe that the Single Equalities Bill provides an opportunity to introduce such protection. • Regulation is important in ensuring compliance with the proposed provision and in ensuring that any exceptions are properly justified, but we do not envisage the need for the establishment of any new regulatory bodies as we believe that appropriate regulation could be achieved through existing mechanisms. PAGE 7
  8. 8. • We do not expect the regulatory burden of a prohibition of genetic discrimination to be great, and we therefore find it to be a proportionate and affordable response. I am happy for you to reproduce this response and to quote from it in your final report and the Commission would be most willing to assist further with the review as you consider how to bring forward legislation. To comply with the HGC’s open working style a copy of this response will be placed on the HGC’s website. Yours sincerely, Baroness Helena Kennedy, Q.C. Chair, Human Genetics Commission PAGE 8
  9. 9. Appendix to HGC response Supporting Evidence Contents 1. Direct anecdotal reports of genetic discrimination in UK 2. Reported concerns about genetic discrimination 3. Evidence from other countries 4. Summary of foreign and international legal instruments addressing aspects of genetic discrimination 1. Direct anecdotal reports of genetic discrimination in UK • A member of HGC’s consultative panel reports: “We could not get the annual travel insurance we have been used to because our daughter had in the last 12 months had a very short stay in hospital due to a crisis. So already there is discrimination on grounds of genetics and not something for the future.” (June 2007, response 1) • A member of HGC’s consultative panel reports: “I can remember as a youth with a father who was suffering from TB. I could not get insurance life cover and was considered unsuitable for employment by some firms such was the aversion to TB in the 1940 to 60 era.” (June 2007, response 2) • A member of HGC’s consultative panel reports: “I did face major problems over life insurance back in the 70s when I had been diagnosed with PKD and the prediction was acute renal failure in my mid 50s. So any policies would get more expensive as I got older. So instead we took out a policy on my wife.” (June 2007, response 4) • A contact at UK Thalassaemia Society reports: “What immediately springs to mind is that I recall 2 instances in which young men had applied to join the forces and been told that they would fail the medical due to being carriers of beta thalassaemia. From conversations with them it appeared that beta thalassaemia trait was being confused with sickle cell trait. I supplied them with literature and asked them to invite the officers involved to contact UKTS. One did so (this was about 3 years ago) but the second, more recent, did not so far. I am not aware of any other discriminatory acts other than those of a personal nature which we are all familiar with.” (August 2007) • The British Society of Human Genetics response to HGC Genetics and Employment Survey comments: “One person reported that an RAF entry offer was taken away from them when they found out that the person was a carrier for FVL [Factor V Leiden].” • A respondent to the Genetic Interest Group survey reports: “A gentleman contacted the MND Association after he was denied critical illness insurance cover with respect to Motor Neurone Disease because his mother had the disease, over 15 years ago. This was despite the fact that in 90% of cases, including his mother’s, MND is sporadic rather than familial. The insurance company did not make any effort to establish whether there was a family history of MND. Thanks to his understanding of genetics (he works in the field) and by providing extensive evidence from the PAGE 9
  10. 10. scientific literature, the insurance company eventually removed their exclusion clause in the policy on offer. This was only achieved after very lengthy and detailed letters which the gentleman wrote directly to the insurance company's chief medical adviser. The insurance company in question, stated they would review their policy, in light of this complaint. Disappointingly, eighteen months on, this hasn’t happened.” The respondent also observes that “The MND Association has heard from others who have encountered similar problems after applying for critical life cover with major insurers. These companies either have no understanding of or choose to overlook key facts about the genetics of MND. Unlike the gentleman in the case above, most who encounter such discrimination do not have the appropriate expertise to argue their case, or even question the exclusion in the first place.” • A respondent to the Genetic Interest Group survey reports that their family was “Socially stigmatised as people don’t want to get involved with people from HD [Huntington’s Disease] families”. 2. Reported concerns about genetic discrimination • A member of HGC’s consultative panel comments: “I have become aware of a case involving a serious late onset disorder genetic condition other than haemochromatosis in which the consultant advises family members to defer taking a genetic test to establish whether they are at risk until they have reached the stage of life when they have taken out whatever long term insurance they are likely to need.”(June 2007, response 5) • A member of HGC’s consultative panel comments: “I do have a concern about the status of the insurers' voluntary 'moratorium'. If this is only as secure as a 'Gentleman's agreement' and there is a possibility that it may not be extended beyond 2011 I think there should be something more legally binding to maintain the current 'status quo' beyond that date.” (June 2007, response 6) • A member of HGC’s consultative panel comments: “I can see potential discrimination in the future if employers, mortgage companies or life insurance companies insist on a full genetic test being applied.” (June 2007, response 4) • A member of HGC’s consultative panel comments: “[I]f accurate risk prediction of future disease becomes feasible from genetic testing I can envisage scenarios where this could present real issues for job applicants, especially for employment that requires high fitness levels or intensive and costly training for which employers will be looking for maximum return from their training investment. It may also dissuade employers from taking on anyone with a propensity for the types of disorders associated with high levels of sickness absence.” (June 2007, response 6) • A Breakthrough Breast Cancer survey, reported to Genetics and Insurance Committee in 2005 found that (in a sample of 48 women with no family history and 23 women with a family history of breast cancer) a significant proportion might be deterred from taking a genetic test if the results might result in an increase in insurance premiums, although the proportion was significantly higher in the group with no family history of breast cancer. http://www.advisorybodies.doh.gov.uk/genetics/gaic/presentation_dec04_breakthr ough.pdf, PAGE 10
  11. 11. • The British Society of Human Genetics Response to HGC Genetics and Employment Survey states: “Anecdotal evidence shows that future employment worries are an issue of concern when having the test done for medical reasons.” • John Sulston, former Director of the Sanger Centre, comments that within the research community “it is widely acknowledged that the combination of privacy and informed consent, which currently satisfies legislation, is ultimately both insufficient for protection and stultifying of research. Insufficient because there is no such thing as totally secure data, and because neither physician/researcher nor patient/subject can be fully informed about future genetics. Stultifying because of vastly increased bureaucracy, and because in an attempt to make it ‘informed’ consent must be sought repeatedly and in detail. In seeking to escape from this dilemma, we need a policy that increases trust through progressive legislation for protection of individuals from harm regardless of their exact consent status.” He adds that the future success of projects such as BioBank may depend heavily on having appropriate protections in a Single Equality Act. 3. Evidence from other countries • In 2001 the U.S. Equal Employment Opportunity Commission (EEOC) settled the first lawsuit alleging genetic discrimination against the Burlington Northern Santa Fe (BNSF) Railroad “for secretly testing its employees for a rare genetic condition (hereditary neuropathy with liability to pressure palsies - HNPP) that causes carpal tunnel syndrome as one of its many symptoms.” Company doctors were also instructed to screen for conditions such as diabetes and alcoholism but were not told they were being screened. One employee who refused testing was threatened with possible termination. (Source: http://www.genome.gov/12513976) • A case is reported in the US in which a young boy who was discovered, following difficulties at school, to have Fragile X Syndrome had health insurance withdrawn on the basis that the syndrome was a preexisting condition. (Source: http://www.genome.gov/12513976 also reported at http://www.gene- watch.org/programs/privacy/genetic-disc-position.html) • A case US is reported in which a social worker lost her job within a week of mentioning that her mother had died of Huntington's disease. (Source: http://www.genome.gov/12513976 also reported at http://www.gene- watch.org/programs/privacy/genetic-disc-position.html) • A case is reported of a healthy, seven-year-old boy , who takes a genetic test which reveals a predisposition to a heart disorder. “Even though he takes medication that lowers his risk of a heart attack, he is denied health insurance. His insurance company argues that since his gene has been present since birth, this qualifies as a pre-existing medical condition.” (Source: http://www.gene- watch.org/programs/privacy/genetic-disc-position.html) • A case is reported in which a woman who has a family history of breast cancer: “both her mother and her aunt have been diagnosed with it. She worries about her future and is considering getting tested for BRCA-1, a gene associated with some forms of PAGE 11
  12. 12. hereditary breast cancer. Ultimately, she decides not to take advantage of the test, because she fears a positive result will jeopardize her chances for promotion at her law firm.” (Source: http://www.gene-watch.org/programs/privacy/genetic-disc- position.html) • “An Alpha-1 patient named Terri Seargent has one of the most obvious genetic discrimination cases in the country at this time. Terri, who lost a 30-year-old brother to Alpha-1, was identified as having the disorder last year. As a preventative treatment her doctor put her on a plasma augmentation therapy used to slow the progression of lung damage. Shortly after receiving the bill for her first treatment, her employer, who self-insured, abruptly fired her, in spite of the fact that she continued to perform her job, in a manner, which her employer had always referred to, as exemplary.” (Source: http://www.ramazziniusa.org/geneticdiscrim.htm) • “The Australian government-funded Genetic Discrimination Project is investigating around 100 claims of unfair and negative treatment of people who have had predictive genetic tests, mainly involving life insurance companies. [University of Queensland social scientist, Dr Sandra] Taylor says that around 47% of 1185 people surveyed said they had been disadvantaged as a result of tests for conditions ranging from Huntington's disease and haemochromatosis to ovarian and breast cancer. Of these 438 or so people, around 87 provided specific incidents of negative treatment, from insurance companies, doctors, employers and family members..” (Source: http://www.abc.net.au/science/news/health/HealthRepublish_1496914.htm) • Three further cases of genetic discrimination in the USA are reported: “Case 1: A man who discovered he was a carrier of a single gene variation that causes Gaucher’s disease and revealed this fact in his job application was subsequently denied employment. He was not at all affected by the condition but risked passing the disease on to his children. Case 2: A woman in the US who notified her existing employers of a positive test for Huntington’s disease was fired from her job. During the previous eight months, she had received a promotion and several outstanding performance reviews. Case 3: A woman who was experiencing slight breathing difficulties went to her doctor for a genetic test because her brother had previously died from alpha-1antitrypsin deficiency. She tested positive for the condition and received lifesaving treatment since the deficiency is treatable if detected early. When her employer found out, she was fired.” (Source: Genewatch report ‘Genetic Testing in the workplace’) • One case of discrimination on the basis of family history in Hong Kong is reported: “In October 2000, three men were awarded a total of £250,000 in damages because they had been refused employment by the Hong Kong Government purely on the grounds that their parents were affected by schizophrenia. The three men had either been refused a job or dismissed from their post without being given a clear reason. An investigation by the Hong Kong Equal Opportunities Commission revealed the link to their family history. It seems that the government employers had completely misunderstood the risks of inheriting this condition. Statistically, someone who has a parent with schizophrenia has a greater chance of developing the disease - a 10% chance compared to a 1% chance in the rest of the population. In fact, the risk for these men was much less since they were in all their early 20s and long past the age when the disease usually appears. More importantly, the symptoms of schizophrenia never start suddenly. Behavioural abnormalities develop well in advance of the full PAGE 12
  13. 13. illness so even if these men had become ill, it is not evident that they would have constituted any real danger in the workplace.” (Source: Genewatch report ‘Genetic Testing in the workplace’) • A case was reported in the British Medical Journal of a teacher in Germany who was refused a permanent job because of a family history of Huntington’s Disease. The risk was revealed during a compulsory medical examination undergone by all applicants to the German civil service. “The occupational physician who carried out the medical check reported that the teacher was fit to perform her job but said that there was a "higher risk" of future absenteeism because members of her family have Huntington's disease.“ (Source: BMJ 2003;327:827 (11 October)) 4. Summary of foreign and international legal instruments addressing aspects of genetic discrimination9 • Many countries acknowledge that genetic discrimination is an area for concern. There is a complex interplay between insurance, employment and healthcare, especially when the country does not have a publicly funded healthcare system. Different routes have been used to legislate against genetic discrimination: some countries have sought to use data protection legislation and some have sought to use equalities legislation. • Germany: the general legal provisions governing the medical profession, combined with the provisions on data protection contained in Federal and Laender legislation, provide a framework for the protection of genetic data. • Slovenia: in the field of biomedicine and particularly genetics, the protection of human rights is regulated by the Act Ratifying the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, the Convention on Human Rights and Biomedicine, the Additional Protocol to this Convention on the Prohibition of Cloning Human Beings and the Decree ratifying the Additional Protocol to the Convention on Human Rights and Biomedicine, on Biomedical Research, in addition to other health legislation. • Spain: the protection of persons with regard to processing of their personal data, including those obtained from genetic testing, is governed by Organic Act 15/1999 of 13 December 1999 on the Protection of Personal Data. As stated in article 7.3 of this Organic Act, “Personal data referring to racial origin, health and sexuality may be collected, processed and disclosed only when so provided for by legislation, on grounds of general interest or if the person concerned gives his or her express consent”. • Russia: DNA examination is conducted on the institutions of the State agencies involved in criminal proceedings and police work and of the courts. The results of the DNA examination does not reveal the physiological traits of the individual’s genetic make-up and state of health and may not be used for the purpose of 9 Most of the information on non-UK jurisdictions is found in the UN Economic and Social Council report on Genetic privacy and non-discrimination available at www.un.org/ecosoc/docs/report.asp?id=1304. Other information was obtained from the GAIC 2nd Annual Report (2004) available at: www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4070357 PAGE 13
  14. 14. “genetic” discrimination. The Russian Ministry of Internal Affairs has drafted a federal act on State genome registration in the Russian Federation. It is aimed at laying the legal bases for the preventive collection, storage and use of biological material for the identification of individuals and of the personal information contained therein on the DNA make-up of the persons for the purpose of enhancing the effectiveness of efforts to combat crime, including terrorism and extremism, establishing the identity of unidentified corpses and searching for Russian nationals, foreign citizens and stateless persons reported missing. • France: a 2002 amendment to the code civil and to the code pénal prohibits discrimination based on one’s genetic characteristics or on predictive genetic tests “having as an object a disease which has not yet manifested or a genetic predisposition to a disease”. • Sweden: standing legislation requires that genetic testing may only take place if it has a medical aim or serves a research purpose. • Finland: a 2001 law provides that employers shall not require employees to participate in genetic testing either at the time of recruitment or during employment, nor do employers have the right to obtain information as to whether an employee has undergone such testing. • Denmark: legislation from 1996 regulates the Use of Health Information on the Labour Market. The aim is to ensure that health checks focus on the actual/present health conditions and that those conditions are relevant to the employee's work. Thus, the Act widely limits the employer's possibilities to ask potential employees for health information including information based on genetic testing. • Austria: both genetic screening and the collection, demand, acceptance or any other utilisation of genetic data on the employees by the employers are explicitly prohibited. • The Netherlands, Luxembourg and Greece: Restrictions to the collection and processing of genetic data at the workplace are provided. • Italy: according to the data protection law of 1996, genetic data may only be processed under the circumstances referred to in an ad-hoc authorisation to be granted by the national supervisory authority. The genetic data expressly referred to in that authorisation may be processed with regard to such information and operations as are indispensable to protect the bodily integrity or health of either the subject, a third party or the community as a whole - on the basis of the subject's written consent. Failing the subject's consent, the processing may be started and/or continued if it is aimed at protecting the bodily integrity or health of either a third party or the community as a whole - exclusively on the basis of a prior ad-hoc authorisation to be granted by the national data protection supervisory authority. • The Preamble to the Constitution of the World Health Organisation (1946): “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. The enjoyment of the highest attainable standard PAGE 14
  15. 15. of health is one of the fundamental rights of every human being without distinction of race, religion, and political belief, economic or social condition.” • The Universal Declaration of Human Rights (UN, 1948), Preamble, refers to the “recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family.” • Convention for the Protection of Human Rights and Fundamental Freedoms (Council of Europe, 1950), Article 14 (Prohibition of discrimination): The enjoyment of the rights and freedoms set forth in this Convention shall be secured without discrimination on any ground such as sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status. • European Social Charter (1961), Preamble, asserts that “social rights should be secured without discrimination on grounds of race, colour, sex, religion, political opinion, national extraction or social origin…” • Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (Council of Europe, 1997), Chapter 1, Article 1, states “Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.” Chapter 4, Article 11 (Non-discrimination) states: “Any form of discrimination against a person on grounds of his or her genetic heritage is prohibited.” • The Universal Declaration on the Human Genome and Human Rights (UNESCO, 1997) Article 6, states: “No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.” • The Charter of Fundamental Rights of the European Union ([2000] O.J.E.U. C364), Article 21 (Non-discrimination) states: “Any discrimination based on any ground such as sex, race, colour, ethnic or social origin, genetic features, language, religion or belief, political or any other opinion, membership of a national minority, property, birth, disability, age or sexual orientation shall be prohibited.” In relation to employment, Article 15 (Freedom to choose an occupation and right to engage in work) states that “Everyone has the right to engage in work and to pursue a freely chosen or accepted occupation.” • The Universal Declaration on Bioethics and Human Rights (UNESCO, 2006), Article 10 (Equality, Justice and Equity) states: “The fundamental equality of all human beings in dignity and rights is to be respected so that they are treated justly and equitably.” Article 11 (Non-discrimination and non-stigmatization) states: “No individual or group should be discriminated against or stigmatized on any grounds, in violation of human dignity, human rights and fundamental freedoms.” PAGE 15
  16. 16. • The US Genetic Information Non-discrimination Act introduced in January 2007 identical Bills H.R.493 and S.358 to the House of Representatives and the Senate respectively. This Bill known as the Genetic Information Non-discrimination Act (GINA) of 2007, would protect people in the US from being denied jobs or insurance because of their genetic status. The President has publicly expressed his support for banning genetic discrimination in health insurance and in the workplace. The Bill is divided into several parts of which Title I deals with insurance and Title II deals with employment. In Title II part (a) of sections 202-205 seek to prevent employers, agencies and labour organisations from failing or refusing to hire or sack employees on the grounds of genetic infomration or to allow discriminating against employees in terms of compensation, terms, condtions or privileges of employment. PAGE 16

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