Even today, couples who have hereditary diseases in the family are offered gene testing to see if they have predisposition that can make their children sick. But what if all the couples planning to have children are offered screening for up to 1,500 genetic diseases?
– With more choices, more responsibility comes. This can in turn create moral stress. Instead of asking couples whether it is time to start a family, they may feel pressured to make "right" reproductive decisions, says Amal Matar at the Center for Research and Bioethics (CRB) at Uppsala University.
Before his thesis Amal Matar has interviewed members of Smer, SBU, the National Board of Health's Ethics Council, the Swedish Medical Association and the Swedish Medical Association. According to them, this type of screening not only arouses ethical issues at the individual level but also issues that concern the whole of society: How should we prioritize already limited health resources?
Screening can also lead to discrimination, or what is called "medicalization" of human reproduction. According to Amal Matar, this can have far-reaching effects on our society and our values. Letting medical science control more aspects of people's lives may not be morally problematic, but it can be perceived as an intrusion into the integrity, the family, and the personal sphere. At the same time, Amal Matar's work shows that people can find ways to express reproductive autonomy through the actual screening process; that they can decide on things that concern, with whom, when and how many children they want.
In his thesis, Amal introduces Matar the concept of "parautonomy" and lists a number of criteria that need to be met before a joint decision can be considered autonomous. For example, both should be able to express their own concerns and their own wishes openly. The couple also need to have enough time to weigh the alternatives against each other, so that they can reach a common decision that is acceptable to both of them.
According to Amal Matar, extended genetic screening before pregnancy can increase the feeling of reproductive autonomy. At the same time, a large-scale screening program could threaten the values on which the Swedish public health service is based: human dignity, equality and solidarity.
– Before we allocate public resources to offer this type of pre-conditional genetic screening, more knowledge is needed on which consequences it can have for our society in the long term. In order for an expanded screening to be introduced in a responsible manner, dialogue and public debate on the ethical and social issues that the technology raises is required. So that we can protect the values on which Swedish care is based, says Amal Matar.
Technology development has made genetic tests both cheaper and more reliable. It is possible to screen pairs for up to 1,500 genetic diseases and conditions, from serious diseases such as beta-thalassemia (a type of chronic anemia) and cystic fibrosis (which destroys the lungs), to mild conditions, such as hereditary fructose intolerance. 19659002] Parents can be healthy and unaware that they have predisposition to the same non-dominant disease, which allows the chances of their children getting the disease is 1 in 4. Couples considering acquiring children are a group that could benefit from such screening programs.
If the screening shows that the parents are carriers, the couple may be offered screening during pregnancy, or in-vitro fertilization and pre-implantation diagnostics. The couple may also consider adopting
Amal Matar, Center for Research and Bioethics (CRB) at Uppsala University, [email protected], 0762-14 14 25  Thesis:
Matar, Amal (2019): Considering a Baby? Responsible Screening for the Future: Ethical and social implications for implementation and use of preconception expanded carrier screening in Sweden