Tuesday, August 08, 2006

Genetic Info in the hands of insurers and employers -legal and ethical issues

UNIVERSITY OF MALAYA
FACULTY OF LAW
HEALTH CARE LAW AND ETHICS




Genetic information in the hands of insurers and employers – Legal and Ethical issues







Humeirah F
LGA050031
Semester 2
21st February 2006










Why should anybody invest all that money to train me, when there are a thousand other applicants with a far cleaner profile? Of course. It’s illegal to discriminate — ‘genoism’ it’s called — but no one takes the laws seriously – From the Screenplay of A Niccol, GATTACA(1997), Columbia Pictures



Preface

Knowledge is power. But in the hands of the wrong person, this power can prove to be a serious handicap.

The advent of genetic information into our lives brings forth broader issues than mere duties of disclosure, confidentiality owed to single persons. Those minuscule packets of information contained in every single cell of our body can reveal amazing stories not just about our past, present and future but also tell us the fate of our ancestors and our progeny. Legal and ethical issues arise once medical practitioners come across important information that may be essential in avoiding an imminent health condition, predictable through the test results of another member of the family. While knowledge and expertise in this area is yet nascent in most jurisdictions, this has not hampered insurance companies and prospective employers from using any available data, however unreliable, in their attempt to assess the worth of the insurance beneficiary or employee. This raises the important question: Should genetic information be used at all?












Introduction

Our genes are those mysterious microscopic puzzle-pieces clustered together in winding, serpent-like strands of what is today known by the acronym “DNA” (Deoxyribonucleic Acid). With enhanced technology, the by-product of Man’s ingenuity, these mysteries are gradually being unraveled so that the mere possession of cellular material which includes hair, saliva, skin, blood or semen among others, can be sufficient to ascertain the physical characteristics of the person in question. This discovery was a novel apparition in forensic science and gave a new turn to tracing criminals through what is known as DNA profiling. But history has proved beyond any doubt that Man’s wistful attribute to be the pioneer, will continue to provide the impetus for constant advancement, amelioration, change and progress. Nothing, absolutely nothing can impede the way. Today, genetic material is scrutinized not solely in determining physical characteristics of a person but also his/her prospective diseases and illnesses . And since genes are the building blocks of future generations, the determination of genetic disorders or abnormalities which are hereditary has also received varied attention and been the object of heated debates across the world.

This paper will analyse the legal and ethical issues surrounding the use of genetic information by prospective employers and insurance companies, comparing the approaches of several jurisdictions, all selected by virtue of the idiosyncrasies of the systems they have put in place.





Genetic information in the hands of Insurance Companies and Employers

The principle of non-discrimination is vehemently opposed to in various international instruments. These mention such characteristics as “sex, race, colour ” with the obvious limitation in the light of contemporaneous advancement, that the qualification excludes “genetic discrimination” – presently the much-condemned practice of insurance firms and employers. This is why the UNESCO gained momentum in drafting the Universal Declaration on the Human Genome and Human Rights in 1997 which proclaims that “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.” Subsequently other subsidiary legislation followed suit .

The process of genetic discrimination, put simply, involves collecting genetic information on a person’s family history to determine his/her premium. Similarly this information can be exploited by prospective employers whereby it may constitute the index for assessing the worker’s productivity and economic utility of employing him/her at all.

Hitherto, tests for only about 700 genes are available and genetic discrimination is taking its toll. This raises the dire question of what the consequences of unraveling the functions of the rest of the genes could entail…

United States of America

(i) Insurance

US debates on use of genetic information by insurance companies have been more legislation-oriented, aiming for strict measures to regulate the commerce. Federal legislation, The Health Coverage Availability and Affordability Act 1966 forbids insurance companies from using genetic information (test results and family history) to exclude from group health insurance. The state of New Jersey has gone one step further and forbids use of any genetic information for any insurance or employment purpose without written consent, and puts an absolute ban on the use of such information to refuse health insurance. On February 8, 2000 US President Clinton signed an executive order prohibiting every federal department and agency from using genetic information in any hiring or promotion action. This executive order, endorsed by the American Medical Association, the American College of Medical Genetics, the National Society of Genetic Counselors, and the Genetic Alliance prohibits employers from requiring genetic tests as a requirement before employing subjects as well as making use of it if it is already available. However this prohibition is not applicable where it is in the interest of the employee where it is necessary to provide the required medical care for the patient as well as in cases where it ensures workplace health and safety .

There are several cases of genetic discrimination which have not received sufficient media attention . One quoted example is that of Lisa’s young son who was suspected of having a learning disability and the doctor tells her, based on genetic tests that Jonathan has Fragile X Syndrome, an inherited form of mental retardation. Her insurance company eliminates Jonathan’s health coverage, claiming that his disability represents a pre-existing condition. Lisa is forced to quit her job to qualify for Medicaid for her son. Similarly another case is where Mary has a family with a history of Breast cancer and therefore refuses to go for a test for fear that she may not be promoted in her law firm.

Genetic discrimination has also extended to the subsequent generations of those who have already been tested. One often cited case in reports on the issue is that of Phil Hardt who has two genetic disorders, namely haemophilia and Huntington’s disease. He has had to hide his condition from employers because of fear of discrimination. His children and grandchildren are being denied insurance without genetic testing for Huntington’s disease. The second evil is that ‘open communication is almost inexistent between parents and their at-risk children regarding how they can better prepare to minimize the destruction of HD if they do have it’, said he in an interview.

(ii) Employers

Genetic discrimination is a term of popular parlance nowadays. In 2001, the Equal Employment Opportunity Commission (EEOC) settled the first lawsuit alleging this type of discrimination. EEOC filed a suit against the Burlington Northern Santa Fe (BNSF) Railroad for secretly testing its employees for a rare genetic condition that causes carpal tunnel syndrome, among other symptoms. BNSF claimed that the testing enabled it to determine whether the high incidence of repetitive – stress injuries among its employees was work-related. Besides testing for this rare problem, company-paid doctors also were instructed to screen for several other medical conditions such as diabetes and alcoholism. BNSF employees were not aware of these tests. One employee who refused testing was threatened to be defrocked.

On behalf of the BNSF employees, EEOC argued that the tests were unlawful under the Americans with Disabilities Act because they were not job-related, and any condition of employment based on such tests would be cause for illegal discrimination based on disability. BNSF conceded and the matter ended there.

It is indeed a relief to note that the mechanisms to regulate the use of genetic information are not solely dependent on action by legislators and ethical committees. The private sector has a great role to play as well. IBM for example, the world’ largest computer maker has pledged not to use genetic date to screen employees and applicants in what is recognized as a novel move by a major corporation .

(iii) Legislation to ‘kill two birds with a stone’

Recently S 306 the Genetic Nondiscrimination Act 2005 sparked excitement as it was established to protect the use of genetic information during employment and by insurance companies. This was the result of thorough and careful research by the Senate Health, Education, Labour and Pensions (HELP) Committee who heard compelling testimony from workers who were genetically tested without their knowledge or consent . S 306 would prohibit insurers in both the group and individual insurance markets from denying coverage outright or pricing that coverage out of reach of consumers based on their genetic information. It also sets limits on requesting or requiring genetic tests. While the health care privacy regulations issued by the Department of Health and Health Services generally allow the use and disclosure of medical information for enrollment, premium rating, or the creation, renewal, or replacement of an insurance plan, S. 306 would bar use of disclosure of genetic information for these purposes. Moreover the bill prohibits insurance companies from requesting, requiring or purchasing genetic information about an individual prior to that individual’s enrolment in coverage. The bill would ban discriminatory uses of that information if it is acquired inadvertently. This bill also builds these protections against genetic discrimination into existing statutes (eg Employee Retirement Income Security Act, the Public Health Service Act, the Social Security Act and the Internal Revenue Code) .

In as far as Employment Discrimination is concerned, S. 306 would bar public and private sector employers, employment agencies, labor organizations, and joint labor-management training programs from making employment-related decisions based on genetic information of applicants and employees. It would be unlawful to refuse to hire or discharge an employee, or otherwise discriminate against an employee with respect to compensation, terms, conditions, or privileges of employment because of genetic information. Employers would not be able to limit, segregate or classify employees in a way that would deprive them of employment opportunities or otherwise adversely affect their status because of genetic information. Unions would also be barred from making membership decisions based on genetic information, and both unions and employment agencies could not make job referrals based on this information. Purchase of this information would also be prohibited. To provide the necessary ‘teeth’ to the Act, individuals would be allowed to enforce these protections in accordance with remedies and procedures allowed under current law.

Since the USA is the very emblem of democracy, term for ‘rule by the people’, what do they think of genetic testing as pre-employment procedure? According to a 2002 survey, most Americans (85%) do not believer that employers have the right to know the results of a genetic test that indicates increased risk of disease .



United Kingdom

In Europe, according to the Convention on Human Rights and Biomedicine: “Any form of discrimination against a person on grounds of his or her genetic heritage is prohibited. Unlike the Declaration on the Human Genome and Human Rights, the Convention is a legally binding instrument in the European counties that have ratified it. Prior to ratification each state has to bring its laws into line with the Convention. Such legislation must include legal sanction and require compensation for individuals who have suffered undue harm following medical treatment or research. Some countries seem reluctant to introduce specific protection against genetic discrimination in human rights legislation. The United Kingdom is one example.

(i) Insurance

Private health Insurance as compared to life insurance is less important in UK than in other jurisdictions because of the existence of the National Health Service. Life insurance, however is a prerequisite for certain types of loan, including in most cases mortgages for the purchase of property. The denial of insurance can therefore have far-reaching consequences on individuals and their families .

In fact as proof of how the law is blatantly failing to cope with the rush for genetic information, it has been reported that the Association of British Insurers is expected to apply to the Genetics and Insurance Committee, another government advisory body, for permission to use tests for the BRCA1 and BRCA2 genes which confer susceptibility to breast and ovarian cancer. This implies that there will be many more Mary-s as pointed earlier in the United States cases. Thus the voluntary moratorium on the use of the most predictive genetic tests results until November 2011 by insurance companies is undependable. The agreement has been qualified as ‘partial, temporary and not legally binding. ’ Insurers have been given the right to use genetic tests in underwriting decisions in the future, provided the use is ‘transparent, fair and subject to independent oversight .’

Already with regard to Huntington’s disease whose onset in during the third to fifth decades of life, a highly predictive test has been made available for the past ten years, and this serves as a model for understanding attitudes about predictive testing. Eighty percent of individuals from families with a history of the disease refuse the offer to be tested. They cite as reasons, lack of treatment and fears of insurance discrimination. In other cases where patients have taken the test, there is lessening of anxiety and depression, even among those tested positive for the disease . It is to be noted that in 2000, the UK government permitted the use of genetic test date for insurance purposes, for a single-gene disease for which the above test was made available. Policy holders were not required to take the test but if they did, they were under the duty to disclose the results.

Nonetheless it must be pointed out that since UK adopts the solidarity-based insurance scheme as opposed to the mutuality-based insurance , genetic discrimination is relatively less likely to take place than in other countries adopting the latter method . This probably explains the rather languid stance of the UK policy makers in drafting any further legislation on the matter .


(ii) Employers

There is certainly insufficient legislation on the control and regulation of the use of genetic information in the UK . The matter of genetic discrimination can therefore be dealt with under anti-discrimination laws. There are three pieces of legislation to this effect: the Sex Discrimination Act 1975, the Race Relations Act 1976 and the Disability Discrimination Act 1995. The protection granted by the first two Acts is based on sexual and racial attributes only. Since many genetic conditions are sex-linked or affect particular ethnic and racial groups, differential treatment of afflicted individuals could amount to discrimination within the terms of these Acts. However as to how claims such as these can be successful is hazy since there are no cases on this point.

The Disabilities Discrimination Act 1995 prevents people who have symptoms of any disorder (which by interpretation could include ‘genetic disorders’) from being discriminated against in the workplace, but someone who has taken a genetic test to predict disability is not covered . Moreover this Act also fails to cover situations where the person has a predisposition of certain illnesses since it applies only to those who already show signs of the disability . Another limiting factor is the exemption for small business. The provisions of the Act do not apply to an employer who has fewer than 20 employees.

The Insurance Commissioner has advised employers only to seek information through genetic testing as a ‘last resort’, and to inform the Human Genetics Commission of any proposals to use genetic testing for employment purposes .

The reason for the absence of legislation in this area is that this matter has not been regarded as a priority on the agenda since there are no cases whereby employers have used such information during pre-employment evaluation . Moreover futile oppositions from other committees and organizations such as the Confederation of British Industry (CBI) which in 2004 , stated that legislation against genetic testing is not an effective means of workable equality legislation, also impedes the development of legislation in this area . These institutions base their argument on ‘genetic exceptionalism’ claiming that genetics should not be singled out because other injustices that perpetuate discrimination occur in the evaluation of employees’ contracts, which deserve more attention .

In a recent report by GeneWatch UK, it was pointed out that the two categories of genetic testing should be differentiated. The first one is for the purpose of revealing the gene type (that is diseases that hereditary and inherently present) whilst the other is conducted for the sake of monitoring damage during the lifetime of a person. GeneWatch is of the opinion that the latter may benefit people so as to monitor the side-effects of exposure to radiation and chemicals, for example in the workplace . The problem in sanctioning one and not the other obviously gives rise to the inevitable danger that the information gathered for the latter purpose is used to further genetic discrimination.

Australia

The situation in Australia is similar to that of the United States. There have been several complaints regarding discrimination practiced by prospective insurers and employers.

The Genetic Discrimination Project in Australia analysed questionnaires completed by more than 1,000 people who had taken predictive genetic tests for susceptibility to serious diseases, such as neurodegenerative disorders or cancer . In November 2005, it was reported that 1 out of 12 persons said they had suffered specific instances of negative treatment, including by insurers and employers. One woman who carried the BRCA1 gene, giving a higher risk of developing breast and ovarian cancer, was denied insurance cover for all types of cancer. Those who had suffered discrimination did not know what action to take to contest it, or where to go for that matter .

(i) Insurance

In May 2003, the Australian government released a 1,200 page report, after a two year joint inquiry by the Australian Law Reform Commission and the Australian Health Ethics Commission. It had been established to review the use of genetic testing, including its use by insurers to assess risk and set premiums - a practice not prohibited under the existing law, but which raised obvious concerns. The inquiry was in favour of using that technology despite calls made by genetic experts to set a moratorium on genetic tests, after epistemological boundaries were properly discerned. The report also recommended the formation of a Human Genetics Commission in Australia (HGCA), which would ensure that genetic tests would only be used in a ‘scientifically reliable and actuarially sound manner.” Probably the only good thing that can be gleaned from the proposal was that the insurers cannot require people to have genetic tests and only base their analysis on tests that have already been done.

Richard Gilbert, Chief executive of the country’s life insurance industry peak body, the Investment and Financial Services Association ( IFSA) opines that “ A genetic test is one piece of a jigsaw that is put together in assessing a person’s insurance risk,” claiming that it is as essential as ascertaining information on family history, age and other medical or lifestyle factors .

Due to the paucity of systematic documentation in Australia to determine the prevalence of genetic discrimination, the precise challenge that it represents to society cannot be properly discerned. Barlow-Stewart and Keays described 48 cases of alleged genetic discrimination which occurred after a positive result of a genetic test for an inherited predisposition to cancer that affected access to life insurance. While it appears that Australian life insurance companies have to date received very few insurance applications involving results of genetic testing, the submissions to the ALRC and the Australian Health Ethics Committee indicate a perceived fear of genetic discrimination in life insurance has discouraged individuals from undergoing genetic testing .

Currently scattered pieces of legislation in the form oh human rights and privacy laws and self-regulation through Health committees provide some self-regulatory measures in the context of the use of genetic information . Otherwise, legislation to prevent genetic discrimination is absent. Several drafts have been proposed but failed to pass through the various legislative procedures to be made law .

It should be noted that under Commonwealth law, the holder of the insurance policy has a duty to disclose information which is relevant to the insurer in assessing risk by the Insurance Contracts Act 1984. State and federal antidiscrimination legislation provides consumers some protection, preventing discrimination by insurance companies on the basis of a disability or impairment. However, insurers are allowed to use reasonable actuarial or statistical data(which could include genetic information) in determining risk, and are able to discriminate if assessment was based on so-called other relevant ‘reasonable’ factors if such information is unavailable .

(ii) Employers

Australia has anti-discrimination legislation at the federal level as well as legislation in all the States and Territories. Focus will be made on Federal legislation in this paper although it must be pointed out that the problem with respect to other legislation is the lack of harmonization.

In relation to genetic discrimination, the Disability Discrimination Act 1992 and the Human Rights Equal Opportunity Commission Act 1984 are the most relevant pieces of legislation. The Sex Discrimination Act 1984 and the Racial Discrimination Act 1975 may also have some application, depending on the nature of the genetic information under consideration. These Acts prohibit employers from discriminating against applicants as well as employees in the selection process, the terms and conditions on which a job is offered and during the course of employment, the training and promotion of opportunities provided or on the termination of employment. In addition, the Workplace Relations Act 1996 contains provisions that prohibit discrimination on a range of grounds in terminating employment.

However it is doubtful whether the DDA covers genetic discrimination. The employment provisions of the DDA attempt to balance the interests of employers, employees and the community, recognizing that disabilities can impact on the ability of a person to do a particular job. It is thus not unlawful to discriminate of a person is unable to carry out the ‘inherent requirements’ of a job because of his/her disability as it would impose ‘unjustifiable hardship’ on the employer to provide the necessary services and facilities that would enable the person to perform the job. However pending formulation by the Attorney General of disability standards required under s 31 of the Act, there is no clear-cut notion of the restrictions on genetic discrimination.

The Workplace Relations Act (WRA) does not refer directly to genetic discrimination but this can be inferred as pointed above since most diseases are gender or race specific . However, once again the employer can discriminate when the employee cannot fulfill the ‘inherent requirements’ of a particular position. The WRA only applies in relation to termination of employment and excludes some employees, for example those still in their probationary period, those employed on a casual basis for a short period or a specific task, and those employed under a traineeship agreement . The protection offered by the WRA is more dependable than that offered by the DDA. Once discrimination is raised as an issue under the WRA, the onus is on the employer to establish to establish that it had a valid reason for dismissal. By contrast, under the DDA, the onus is on the complainant to establish discrimination and this can be difficult in some cases .

Occupational and healthy safety regulations may also play a pivotal role in restraining genetic discrimination but problems may emerge in discerning the boundaries of the application of the rules. Employers may wish to use to genetic information to assist them in fulfilling their obligations to protect employees from exposure to hazardous substances in the workplace. However action taken as a consequence of genetic monitoring, such as moving an employees to a lower level of exposure which may involve a ‘demotion’, may amount to, or be perceived to be, unfair discrimination. Although the legislation in certain States allows the employer to take such action as is ‘necessary’ to avert harm, this subjective qualification may be abused .

Fortunately there have not been many reports of genetic discrimination in the workplace . However an inquiry by the Australian Law Reform Commission notes that it is possible that the number of complaints (only three) is not an accurate reflection of the actual size of the problem in the workplace. This is because people are not aware of their rights, and even if they are, are fearful of being victimized.

The three cases of genetic discrimination in the workplace cited by the Barlow-Stewart and Keays’ survey were as follows: in one case, a young woman reported that when she applied for a position with the public service, she was told that her successful application depended on a negative gene test for familial adenomatous polyposis (FAP). The employer knew she was at risk of the disease because she was undergoing regular colonoscopies for early signs of bowel cancer. When her gene test was positive she did not continue her job application. In the second case, a young man who applied for a position in the armed forces reported that he was required to provide evidence that he did not have the relevant genetic variation for a connective tissue disorder called Marfan Syndrome, of which he had a family history. As he had participated in medical research overseas he was able to produce documentation indicating that he had not inherited the faulty gene. He was subsequently accepted for the position .
Another documented case of discrimination involved an individual with Huntington’s disease who was initially rejected for a position with the public service. The man was informed that he would only be employed if he could provide evidence that he did not have the relevant genetic mutation. Following a written appeal to senior management this decision was reversed .

In December 2005, the Australian Government announced that it would be tightening the Disability Discrimination Act to prevent genetic discrimination by employers .

Malaysia

In the recent meeting of the Economic and Social Committee held in New York between 28 June – 23 July 2004, the Malaysian delegation presented its report , highlighting its concerns over the misuse of genetic information and stated its plan to enact the Personal data protection bill which would include such provisions. It was also stated that existing provisions on this subject are contained in the Private Health Facilities Services Act 1998 – s 115 (Confidentiality of Information), Confidentiality between doctors and patients is addressed in the Medical Act 1971 – Section 29(2)(b) which provides for “disciplinary proceedings against registered medical practitioners in breach of professional conduct. This is based on the Code of Conduct of Professional Conduct – Section 2: Abuse of professional privileges and skills (Abuse of trust and confidence). Doctors are expected to conform to the guidelines issued by the Malaysian Medical Council in carrying out their duties.

It is also stated in the paper that the Government of Malaysia plans to draft a Bill on Persons with Disabilities which would prohibit discrimination against such persons in both the public and private working sectors, education and other areas. Although the Bill does not specifically provide for the non-discrimination against persons with disabilities based on their gene pool information, it does however provide for some protection against discrimination on such basis.

Added to this the Ethical Research Committee of the Ministry of Health does not allow genetic testing to be carried out on any specimen that is sent overseas or in any research where genetic testing is not included in the main objective. If there is a request to do so, consent has to be obtained from the trial subjects with the condition that they need to understand fully the implications of the tests being carried out.

It is clear that there exists scant, if not at all any, legislation if the practice of genetic discrimination becomes a practice by employers and insurers. In fact, to make matters worst, unlike in other jurisdictions where legislation against discrimination based on disability can be relied on where genetic discrimination arises, Malaysia has none to that effect.

“In fact, the very notion that pre-employment discrimination is reprehensible is absent. Unskilled women workers, for example, are often employed only after a physical examination to determine that they are not pregnant, and sometimes to determine that they are not suffering from an illness such as asthma. Employers do not have to give reason for not employing any particular individual. The unions are relatively weak; in any case only about 10 % of the labour force is unionized. Under such circumstances, Malaysian workers are especially vulnerable to practices of genetic discrimination if and when such technology becomes available. ”

It is noteworthy that the dangers presented by genetic testing are real and imminent, considering that the fear of discrimination and actual discrimination already have imprints on the minds of people. To illustrate this fact, the following case is picked from the New Sunday Times newspaper and tells the story of Beh Yoong Hooi, diagnosed with haemophilia.

“Diagnosed with haemophilia when he was an infant, Beh, 25, realized he was a bit different from others when he started primary school.
Football was out. But hey, no sweat. There was table tennis. He was good enough to represent Gombak for four years.
He would have liked to go for the state level competition but the training was too extreme.
Beh walks with a limp. His right ankle is bigger than the left. Halfway through the interview, his gum started to bleed.
Wiping it with his fingers, Beh said the gum area was a frequent bleeding spot. It was a public holiday. It meant he had to go to Kuala Lumpur General Hospital for treatment.
“The National Blood Centre no longer operates after office hours and is closed during public holidays.”
A graduate of the University Putra Malaysia, Beh works as a research and development officer with a Bangi-based pharmaceutical company.
Fearing he would not get employment, he did not tell his prospective employers about his condition. Although bubbling with optimism, Beh still harbours the fear of being stigmatized.
Needing treatment twice or thrice a week, Beh makes sure he works late hours to replace the two hours needed for him to drive from Bangi to Kuala Lumpur for treatment. ”

Dangers of relying on genetic tests

There are no recorded cases of reliance on misleading genetic tests results by insurance companies or employers. However the possibility cannot be excluded since cases where diseases have not been diagnosed have emerged previously. In the Californian case of Sierra Creason , for example the parents of Sierra, a minor sued defendant State of California for damages arising from its failure to diagnose and report timely and accurately that Sierra was suffering from congenital hypothyroidism. The Court of Appeal reversed the decision of the trial court concluding that plaintiffs adequately stated a cause of action against defendant for failing to diagnose and report Sierra’s test results accurately.

By the Hereditary Disorders Act 1995 there was a mandatory duty on the State to select accurate standards for testing and reporting of possible congenital hypothyroidism, breach of which could give a private cause of action to plaintiffs. Since the test was “negative” according to the physician’s diagnosis, no further medical intervention was carried out on Sierra and it was later discovered that in true fact, she did not even have a thyroid gland. (congenital hypothyroidism is a genetic disorder that can be detected from a low count of thyroid in the blood) .

Thus the dangers of genetic discrimination are manifold. Correct as well as incorrect evaluations of genetic anomalies can be stigmatizing and a traumatizing experience for the individual.


Other Ethical Issues

One ethical consideration that can be explored is the problem posed when genetic discrimination has no basis, and is therefore unjust. This is because it is scientifically inaccurate in that genes do not tell the whole story of a person’s fate because most of the conclusions are based on probabilities. Moreover, since the impact of diseases is varied among persons, it is unfair to label people by such criteria. Furthermore the social benefit arising out the concept of insurance in the first place is defeated as people are removed from insurance pools. In fact, the spreading of risk across a community (community rating) is exactly what the public intended when it first allowed private insurers to provide such an important social product.

Perhaps the insurance industry fails to see the bigger picture where including people in insurance pools despite genetic disorders may be economically beneficial to them in the long run. This is because early identification of risk status may actually lead to insurer cost savings as a result of preventive care and longer life spans during which premiums can be collected.

It is also predictable that insurance companies will not only make use of genetic information to determine premiums on today’s generation but the next as well as this precious information will be gathered and stored for future use. Allowing the use of genetic information in this way may even give people the necessary impetus to wanting to change their surnames so as not to be adversely labeled and discriminated against.

Other than the above named concerns, jurisprudential issues have also arisen whereby the scope of discrimination within genetics is being debated. Some jurists argue that establishing a separate form of discrimination( i.e ‘genetic’) can lead to genetic determinism which may have the opposite, undesired effect of furthering it. This is the belief that carrying a specific genetic mutation has a much more determinant and inevitable impact on people’s health, well being and potentially even behaviour, than other health factors. This could contribute further to stigmatization and discrimination.

Another conceptual defect in branding such behaviour as ‘genetic discrimination’ is to detect the exact scope of the term ‘discrimination’. For example, this term can cause confusion in the context of insurance so that the legislator would have to specify if he/she wishes to prohibit all types of genetic discrimination, including actuarial or rational discrimination, or simply irrational discrimination.


Conclusion

Up to now there have been no reported cases of abuse in the UK or Malaysia, unlike in Australia and the US. The evidence in the latter jurisdictions is alarming and the former countries should make intelligent use of those experiences to implement preventive measures before the practice is institutionalized.

Gathering genetic information has overstepped the boundary of just being termed a ‘medical procedure’ to a new way of creating social categories. The basic principle that people should be evaluated individually based on their merits and capabilities is blatantly being usurped by the new practice of genetic discrimination.

Another danger is that exaggerated emphasis on genetic diagnoses will draw attention away from social measures that are needed to ameliorate most diseases, including equitable access to health care. Once socially stigmatized behaviour, such as alcoholism or other forms of addiction or mental illness are categorized as ‘genetic diseases’, economic and social resources are likely to be diverted into finding biomedical ‘cures’ while social measures will be abandoned. People will blame their genes for the slightest anomaly in their lives, whether psychological, physical or otherwise and the result can imaginably prove to be disastrous.

Finally, it would be interesting to note that the philosophy behind the principle of non-discrimination focuses on the evil of labeling people by virtue of traits that are not alterable. Hence some jurists claim that discrimination based on gender and colour is deemed more despicable than that based on cultural or religious affiliations. This is why it is contended that minorities in the world have received very little attention in safeguarding their ethnic and cultural identity. In a similar way, genetic traits have that attribute of permanency that leaves the individual helpless, at the mercy of his/her genetic legacy – which makes it all the more condemnable to condemn the condemned.



























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• Genetic Alliance – Advocacy, Education and Empowerment – “Genetic Discrimination”. Available online at http://www.geneticalliance.org/ws_display.asp?filter=policy_discrimination (3.2.06)
• Anna Salleh “ Gene tests: too unreliable for insurance?” – Friday 29 August 2003 – ABC Science Online. Available online at http://www.abc.net.au/science/news/health/HealthRepublish_934272.htm (21.3.06)
• Australian Law Reform Commission – Protection of Human Genetic Information:Genetic Discrimination in Employment– ALRC Discussion paper 66. Available online at http://beta.austlii.edu.au/au/other/alrc/publications/dp/66/27GeneticDiscriminationinEmployment.html#fn9 (3.3.06)
• Elly Lynch, Rebecca Doherty, Clara Gaff, Finlay Macrae and Geoffrey Lindeman, “Cancer in the family” and genetic testing: implications for life insurance, Medical Journal of Australia 2003; 179(9): 480-483. Available online at http://www.mja.com.au/public/issues/179_09_031103/lyn10352_fm.html (2.3.06)

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