Gene machine: Keep your hands off our genes

Not perfect? One day soon it might cost you your job. The UK government has refused to rule out for good genetic testing at work. Hazards editor Rory O'Neill warns that as the gene test gizmos and gadgets make genetic screening a wrong-headed but cheap choice for companies, we may find perfectly capable workers are discarded because of unsound and unsafe workplace gene tests.

Employer want gene tests

In recent years, genetic testing has become an affordable option, unregulated and used routinely by the police and increasingly common in our hospitals.

At work - where being at risk of an occupational disease isn't a crime or a personal trait, but the result of an exposure to an occupational risk - many, maybe most, UK employers are interested in using genetic screening as a scientific shortcut that could weed out the weak and cut compensation and sick leave.

An Institute of Directors report in 2000 found that 50 per cent of employers responding to a questionnaire thought it would be appropriate to conduct genetic testing "to see if employees are at risk of developing an occupation-related disease due to exposure in the workplace" and 34 per cent thought it would be appropriate "to see if they will develop heart disease which might affect sickness or early retirement" [1].

One problem. They are wrong - where genetic testing has been used at work, it has been a disaster. In the US, where employers and insurers have been most enthusiastic for the tests - a 1997 survey found up to 10 per cent of firms might already be using gene screening (Hazards 74) - equality chiefs have ruled it out of order and the government is on the verge of outlawing the practice entirely.

Stop the gene testers

UK law needs to be changed to prevent employers from refusing people jobs on the basis of genetic test results, campaigners have warned.

In September 2003 TUC teamed up with GeneWatch UK and the British Council of Disabled People (BCODP) to call for legal measures to block genetic discrimination at work.

A GeneWatch report, Genetic testing in the workplace, published on 25 September 2003, the day the Human Genetics Commission (HGC) met to consider the UK government's response to its recommendations on genetic discrimination, reveals that genetic tests cannot accurately predict which workers will suffer future disability or illness [2].

Despite this, many employers wish to use genetic test results and many research projects are seeking to identify people who are "genetically susceptible" to workplace hazards. It adds that workplace hazards affect everyone - not just people with "bad genes" - so the remaining workers would still be at risk.

"Some employers might see selecting workers on the basis of genetic tests simply as a more economic and efficient means of employee selection," says the report.

"Picking and choosing workers to suit hazardous environments or cut pensions costs is totally unacceptable,' said Dr Helen Wallace, deputy director of GeneWatch UK. "The government should act now to close the loophole in the law. Worker exclusion must not replace employers' obligations to clean up workplaces for all."

Andy Rickell, director of the BCODP, said: "We are very concerned about this pernicious means of disability discrimination and totally oppose it."

And TUC general secretary Brendan Barber said: "We want the government to make sure everyone has an equal right to succeed at work, whatever their genetic inheritance. We should be promoting opportunities for all, not penalising people because of their genes."

In January 2002 TUC's own report, Ban unfair screening, said "we oppose susceptibility screening as this will remove the emphasis on an employer's legal duties to make the workplace safe for all" [3].

It added "first and foremost employers must provide a safe working environment... this type of genetic screening is about eliminating the worker rather than the hazard which is simply unacceptable."

Without exposure to hazards, we can all work safely, regardless of our alleged genetic foibles, said the TUC.

The June 2003 government White Paper on genetics in the NHS, however, made no commitment to legislation to prevent genetic discrimination. Instead, the government has since 1991 opted for a "moratorium," a watching brief that leave hope for the biotech, business and insurance industry lobby and their gene test hopes.

Gene tests don't work

In 2001, Hazards warned of serious dangers in the use of genetic screening at work [4].

IT NEVER WORKED: Attempts in the 1960s to introduce workplace genetic screening were soundly rejected because occupational and environmental factors were a far more productive focus of preventive action;

IT STILL DOESN'T WORK: Efforts over 30 years to push gene screens for sensitivity to the potent workplace asthma cause TDI and other substances have failed;

IT MISSES THE POINT: Genetic screening tended to give some - often dubious - protection from one risk. Many targeted substances including benzene, beryllium, lead and cadmium had many more and more serious risks for the entire workforce that would have been a better focus for "preventive" efforts; and

IT IS DISCRIMINATORY: The markers chosen were often linked to race - Sickle cell, Tay Sachs, Glucose-6-phosphate dehydrogenase (G-6-PD) deficiency - or gender, which could have lead to something uncomfortably close to workplace eugenics.

Every body loses

The GeneWatch report warns that efforts to winnow out the weak or the susceptible are "fundamentally flawed."

The report says: "Genetic tests could result in many - perhaps hundreds - of workers being excluded to prevent one case of a workplace-related disease. The majority of those excluded would suffer the ill-effects of unemployment on their health and finances, even though they might not actually belong to a higher risk group." The report argues:

• There are more effective ways of improving employees' health - for example, meeting legal duties and ensuring risks are "eliminated, reduced or, at the every least, effectively controlled."

• The imbalance of power between employer and employee makes it difficult to ensure than employee is giving their voluntary consent to a genetic test - job applicants could face discrimination and existing workers might not be able to walk away from a high risk job, but could have the test used against them if they didn't leave the job and went on to develop an occupational disease.

• A genetic test could have wider implications - for blood relatives who might have a similar genetic trait, or when applying for other jobs or for insurance.

• The use of genetic tests is unethical - excluding people from employment on the basis of their genetic make up would constitute a violation of their fundamental human rights.

• The potential for discrimination - tests are complex and open to misinterpretation, an lead to "false positive" results, and lead to a generally unemployable "genetic underclass."

For those with something to gain - the plethora of firms flogging testing kits for example, of the employers looking for a cut price alternative to safe work - the your-money-or-your-life argument might have its attractions.

It seems unethical at best that 21st century workplaces, where there is the capability to cheaply obtain a person's genetic fingerprint, can argue they can't make their workplaces safe.

Testers face legal pitfalls

Where tests have been used, employers have sometimes found themselves on the wrong side of the law. In the US, legal, equal opportunity and governmental bodies have acted to curtail the practice.

In 2002, the US Equal Employment Opportunity Commission has told Burlington Northern Santa Fe Railroad that its use of secret genetic testing of some employees violated federal law (Hazards 74).

An EEOC official said Burlington Northern broke the Americans with Disabilities Act by treating employees with carpal tunnel syndrome as disabled and then discriminating against them, and should pay compensation.

In December 2000, a US federal court approved a $2.2 billion settlement to thousands of employees of Lawrence Berkeley Laboratories who had been secretly tested for decades for syphilis, pregnancy and the genetic trait for sickle cell disease.

The only possible justification for genetic testing in the UK would seem to be a cut-price alternative to compliance with health and safety laws.

Gene tests have never had the approval of the UK safety establishment. A 1995 Health and Safety Commission working group concluded genetic science was not a reliable and accurate predictor of a predisposition to occupational ill health.

Tests fail the test

GeneWatch argues that your genetic fingerprint is personal, and not personnel, information. This argument appears to be winning in the US too where, despite the support of a powerful business and biotech lobby, genetic screening's days could be numbered.

In October 2003 the US Senate voted by overwhelming majority to approve legislation that would prohibit companies from using genetic test results to make employment decisions, deny health coverage or raise insurance premiums.

The measure, which will now move forward for consideration by the House of Representatives, would bar insurers from requiring genetic tests, from obtaining test results, and from using the results of tests to increase insurance premiums or deny coverage.

Employers would be barred from seeking most genetic information, and from using any such information to influence hiring or promotion decisions.

Employers could, however, require testing to monitor potential ill effects from workplace exposure to hazardous substances. And disability and workers' advocates warn that the proposed US law has employer-friendly loopholes - it would not, for example, rule out gene tests in occupational disease compensation cases, so the gene testers could still have a route into the workplace.

Positive approaches

Europe's top union body called on 29 October 2003 for a ban on genetic testing in the workplace. ETUC position said a prohibition should to be included explicitly in a European Commission directive on the protection of workers' personal data [5].

The proposed Europe-wide law is opposed by European employers' groups and strongly supported by unions [6].

ETUC said gene testing would distract attention from efforts to remedy occupational hazards "in particular in the chemical field" and it could "introduce discrimination among workers according to certain genetic characteristics.

"The United States' experience shows that genetic screening could lead to indirect forms of racial discrimination."

ETUC added: "From the prevention point of view, nothing justifies a genetic screening compared to risks at work." Austria, Belgium and Finland have already prohibited genetic screening in the workplace, it said.

The European Group on Ethics in Science and New Technology, a European Commission advisory panel, issued a 28 July 2003 Opinion on the ethical aspects of genetic testing in the workplace which concluded "employers should not in general perform genetic screening nor ask employees to under go tests" [7].

It added: "The use of genetic screening in the context of the medical examination... is not ethically acceptable. The legitimate duties and right of employers concerning the protection of health and the assessment of ability can be fulfilled through medical examination but without performing genetic screening."

Danger signs

Elsewhere, developments have given the gene test lobby more reason to be cheerful, despite enforced union contributions and compelling arguments.

In January 2002, Australian unions said employers should "be prohibited from requiring, requesting, collecting or disclosing information derived from genetic testing of current or potential employees."

In submission to an official Australian Law Reform Commission (ALRC) enquiry [8], union federation ACTU said: "Although sometimes justified in terms of protecting workers' health and safety at work, the ACTU submits that this is an inversion of the fundamental principles; employers are responsible for providing employees with a safe and healthy workplace, while work-related illnesses and injuries are caused by hazards in the workplace, not by employees' genetic make-up."

The ACTU submission added "the focus in workplace health and safety needs to be on hazard removal, not on a mathematical calculation of risk based on genetic testing."

In May 2003, the ALRC report, Essentially yours: The protection of human genetic information in Australia [9], concluded "it is not appropriate to impose a complete prohibition on the use of genetic information by employers to screen for work-related susceptibilities."

The ALRC rationale is straight out of the employer-insurer-biotech play book.

An accompanying news release concluded "the arguments in favour of genetic screening for work-related susceptibilities include its potential to protect susceptible employees from avoidable risk to their health and safety, and to protect employers from potential legal liability and financial costs for illness suffered by susceptible employers."

It says that gene screening should "generally" be conducted only on a voluntary basis, but adds in certain circumstances "it may be reasonable to implement a mandatory screening programme."

Findings like this will give the biotech companies hope there is an market out there for the test kits, and will give employers a glimmer of hope that they will be able to reduce their risks without reducing the risks at work. It is a dangerous development.

For you - it is your body, your genes, your future. When the boss sends in the gene testers, remember it may be their company, but your genetic fingerprint is your business.

We don't like it The 2003 GeneWatch report concludes that: • Genetic tests cannot accurately predict which workers will suffer future disability or illness. Many false test results are likely. • Despite their poor predictive value, many employers wish to use genetic test results and many research projects are seeking to identify people who are "genetically susceptible" to workplace hazards. • If genetic tests were used, large numbers of people would need to be excluded from employment to try to prevent a single case of workplace illness. Workplace hazards affect everyone - not just people with "bad genes" - so the remaining workers would still be at risk. • People with adverse genetic test results but no symptoms are not protected by the existing Disabilities Discrimination Act. And we won't have it The TUC has called for strict genetic screening safeguards to protect workers from unscrupulous, discriminating employers. In its 2001 submission to the Human Genetics Commission, TUC: • Opposed susceptibility screening as it removes the emphasis on an employer's legal duties to make the workplace safe for all. • Called for an amendment to the Disability Discrimination Act 1995 to include asymptomatic (symptom-free) employees, or prospective employees, who have tested positive to a genetic mutation. Pre-employment screening may be appropriate in rare occasions but employers carrying out such tests should still be subject to disability discrimination laws. • Demanded employers be prohibited from using genetic information to affect the terms, conditions, privileges, and benefits of employment. • Insisted an individual should never be forced to take a genetic test for employment purposes. Ban unfair screening: TUC response to the Human Genetics Commission, January 2002 (see Hazards 74).

References

1. Employers' viewpoint: Testing times: Directors' views on health testing at work. Institute of Directors, August 2000. [pdf]

2. Genetic testing in the workplace, a report by GeneWatch UK, 2003 [pdf] • TUC news release • GeneWatch news release.

3. Ban unfair screening: The TUC's response to Whose hands on your genes?, 20 March 2001.

4. No more working weak?, Hazards 74, April-June 2001.

5. Nothing justifies a genetic tracking compared to the risks of work, ETUC news release, 29 October 2003.

6. Commission issues second stage consultation on data protection, EIRO, November 2002.

7. Opinion on the ethical aspects of genetic testing in the workplace, European Group on Ethics in Science and New Technology, 28 July 2003 [pdf] and accompanying document [pdf]

8. ACTU submission on protection of human genetic information, ACTU, Australia, 19 January 2002
and ACTU response into protection of human genetic information discussion paper 66, December 2002
.
9. Essentially yours: The protection of human genetic information in Australia, Australian Law Reform Commission (ALRC), report no.96, May 2003. Chapter 32 - occupational health and safety.