Letting companies require workers to have genetic tests and disclose the results sounds practically dystopian. But that鈥檚 the effect of a .
Employees can refuse to comply, but risk being penalised by having to fork out thousands of dollars in extra health insurance payments 鈥� the threat of which might be enough to coerce them into going along with it.
This inflammatory proposal has been backed by Republican members of the House of Representatives Committee on Education and the Workforce.
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With US employers funding a large chunk of employees鈥� health insurance, they may, understandably, want to rule out staff having certain health risks, which would in turn keep premiums down. Sure, genetic tests can quantify some of those risks. But the bill blows a huge hole in the principle that genetic testing should be voluntary and directly undermines the US Genetic Information and Non-Discrimination Act (GINA).
What鈥檚 more, many of the risk-reducing options for those few genetic conditions where testing is considered a good guide to the chance of serious illness are highly personal decisions. These should have nothing to do with an employer.
They include reproductive choices and prophylactic surgery. Such options would apply, for example, to those with a risk of passing on a serious genetic disease to children or with gene variants that dramatically increase risk of breast cancer. If there is coercion in testing, could there be coercion over such life-changing choices as forgoing a family or having major surgery?
That should never be the case. Privacy is sacrosanct. People should be employed on the basis of skills and expertise, not future health risks.
鈥淲ill relatives of those with a chronic genetic disease face discrimination when seeking work?鈥�
The US bill goes even further though. It includes genetic and medical information for employees鈥� partners and relatives, who may be covered under the same workplace insurance. So the breach of privacy would be much wider. Will we soon find that the relatives of those with a chronic genetic disease or disability face discrimination when seeking work?
Crucially, genetics as a field is still developing, and some interventions based on it have turned out to be wrong turns. Testing for sickle cell is an historical example: especially in the US, black Americans remember discrimination in the workplace based on mixing up sickle cell trait and sickle cell disease. Both have a genetic signature for the disease, but those with the trait have only one copy of the sickle cell gene and are symptom-free.
A more recent example relates to a gene variant linked to sudden cardiac death. Some relatives of people who had died of it were tested for this variant and given defibrillator implants, although it later emerged that they had non-pathogenic gene variants. Obligatory testing can easily lead to a slippery slope, where we are too quick to advise medical interventions.
In the first half of the last century, people in many European countries experienced coercion in relation to genetics and reproductive choice: it was called eugenics. That history has not been forgotten in Europe, and should not be forgotten elsewhere.
