As genetic tests become increasingly cheaper, the temptation to take one, principally to find out what illnesses we may be predisposed to, also grows. If the secret to how we will die is hidden in our genes, isn’t it worth getting our genome (our entire DNA) tested to find out?
But according to Etisk Råd, a council of ethics experts that advises parliament on bio-tech issues, the tests raise a number of questions, both because of the trustworthiness of the information, and because of the potential impact that the tests might have on people’s lives as a result.
In a report on the consequences of genetic testing that the council is presenting to parliament today, it recommends increasing the availability of counselling for those considering a test.
“The council recommends that gene tests are used with caution, as a full genome test is quite different from traditional genetic tests in which one or a few genes are tested at a time,” the council wrote on its website. “A person’s entire DNA is studied in a genome test, which can result in a lot of unsure information about the risks people have for developing different illnesses.”
The council adds that in most circumstances, genome tests on healthy people will be worthless and could even have negative consequences for individuals or society as a whole.
“It is doubtful that there will be any value in healthy people taking genome tests, as the results could lead to false alarms or the taking of un-necessary precautions, thereby increasing the risk that people may make bad health decisions,” said Professor Gunna Christiansen, the chairman of the council's genome test workgroup.
The council’s recommendations come at a time when genetic testing has become increasingly cheaper while also offering the potential to discover vast amounts of information.
This information is far from conclusive, however, and while some genes can indicate the risk of us contracting certain diseases and cancers later in life, we do not yet understand how and why genes affect our bodies and our health.
“Most of the widespread illness − such as type 2 diabetes, chronic heart disease and cancer − involve a combination of genetic and non-genetic causes,” the council writes.
It recommends that people seeking genome tests should be offered a ‘genetic counsellor’ who can advise them about the ethical dilemmas they might face after taking a test. While there is no legal obligation in Danish law to offer counselling before a test, an EU convention on biomedicine, that Denmark has signed and ratified, does.
It further recommends that patients should have the right not to know particular aspects of their test that would reveal the risks of developing certain diseases. This would be necessary particularly in cases where people offer their genetic information for research purposes.
Children ought to only be able to consent to having genome tests for diagnostic purposes from the age of 15, and for research from the age of 18, the council recommends. It does, however, leave open the question of the extent to which parents can have their children’s genomes tested.
This is especially important given the limited number of professionals who are qualified to interpret the results of these tests.
“We need to make sure that we do not overburden the health service,” Christiansen told Jyllands-Posten newspaper. “People will take the results to the doctors, and there are only a few doctors qualified to give advice. That is why we need to ensure there are qualified people who can give answers.”