Couples who have hereditary diseases in the family are already, today, genetic testing to discover whether they carry the gene that would make their children sick.
But it is not always that parents are aware of any possible predisposition to serious diseases that they carry on. And, in some cases, must carry the gene to be present in both parents for the child to be at risk of being affected by the disease.
There are including a number of rare, genetic diseases such as severe disability and premature death for the children affected.
already before the pregnancy can help couples to find out if their children would run the risk of suffering a serious illness. But what would happen if all parents who plan to have a child is offered a public screening for up to 1,500 genetic diseases?
put this question to Amal Matar, phd student at the Centre for research and bioethics at Uppsala university, in the dissertation which she now defended. She was interested in what ethical and social issues that a screening programme would bring.
It is important that couples have the right to say yes or no to that test.
In the work with the thesis has Amal Matar interviewed experts in, inter alia, the State’s medical-ethical council, the SBU, the national Board ethics council, the Swedish society of medicine and Swedish medical association about what such a screeningerbjudande in Sweden could lead to ethical and social.
ethical problems with such a open screening. Both for parents and for society at large.
For couples, it can mean that the time before they decide to try to have a baby ”medikaliseras”. Instead of upprymt have to devote their thoughts to the possibility to bring children into the world, what it can mean to be a parent and if they need to review their living arrangement, so they become, instead, a part of the health system.
And they would make a decision whether to test as it can affect their ”reproductive autonomy”, that is to say that parents can decide over the issues with who and when you want to have children, and how many you want. It can be experienced as an intrusion into the personal sphere and the integrity of the family. It is important that couples have the right to say yes or no to test themselves, ” says Amal Foods.
– If you offer the test to couples who are not interested in so you can say that you are invading their privacy.
which indicates a positive result, that is to say, the predisposition to certain diseases, not only affect the parents but also the family and relatives around, like cousins or uncles.
another aspect of such a test is that it can lead to increased discrimination of disabled people, that we begin to divide people in the perfect and non-perfect individuals, ” says Amal Foods.
parents do not always know whether they carry the genes for serious diseases. Photo: Lise Åserud/NTB/TT
She stresses that this type of general test is not available in Sweden yet. But it is important to be prepared when they show up.
Technology is offered on a commercial basis within the private health sector in the united states. It is rich and well-educated couple who make these tests. But yet there are not tests as part of the public health services there, ” says Amal Foods.
– the Reason is often that the parents want to be sure that the child will not be affected by some hereditary diseases.
Amal Matar says that we must ask ourselves the question of what kinds of diseases we should be tested for. It is only about the very serious diseases or even if the moderate diseases that you can live a life with? It would mean that you have to define what is a serious illness, says Amal Foods. And how do you do it? For example, there is a disorder that leads to severe pain?
– the Choice of this type can create a moral stress of the couple. Instead of reasoning with each other if they want to start a family together, they can feel pressured to make the ”right” reproductive decisions, ” says Amal Foods.
that the relationship can be put to the test on a couple of offers to test. If a partner wants to perform the test and the other does not, it could create a crisis in the relationship. It becomes very stressful for the parents.
– On the other hand, it can also be very stressful for parents to have a very sick child. Both of these aspects were mentioned by those I interviewed, ” says Amal Foods.
With the new technology of parents which proves to carry the same predisposition for a disease to have more options.
But there may also be benefits for the couple to let the test even before trying to have children.
– With the new technology of parents which proves to carry the same predisposition for a disease to have more options. Because the test is done before the pregnancy can they think in peace and quiet. They can consider sperm donation. They can turn to an IVF-clinic where only the good embryos are selected. They can take a chance on that the child does not suffer. They may also choose to adopt, ” says Amal Foods.
would not only affect the individuals. It can also have major consequences on the society at large. The experts in the survey believe that health care’s fundamental values of human dignity, equality and solidarity would be challenged.
Among other things, stated that it is important to discuss the priorities within the health care system. It is this already limited health care resources should be used in the public health care system? Perhaps it is better to put the money on more urgent care as cancer treatments?
– to launch A screening programme would cost very much money. It is not just about offering the test, but also what happens before and after the test. All couples must get counseling both before and afterwards. They must have the opportunity to discuss what forms of treatments that are available to get.
Amal Matar, the concept of ”couple-autonomy”. She specifies a number of criteria which must be fulfilled in order to a couple’s joint decision can be judged to be autonomous, that is to say independently:
* Both should be able to express their wishes, and their own concerns openly.
* the Pair need enough time to be able to weigh the different options against each other. Then they can make a joint decision that both can accept.
Amal Matar says that it is important that the ethical and social issues that possibility raises discussed in public in the society so that the values on which the Swedish health care is based on can be preserved.
– Before we are using our resources to offer this type of screening, we must carefully study what the consequences for society can be in the long term.
” My conclusion is that they had not assessed that they were ready to say yes to a general screening program for prospective parents at the moment.
– at the same time as asking for more research. It is such a new technology that we don’t know so much about how it would affect us if it were fully used.
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