Parental Perspectives and Law
Among all human practices, procreation seems the most paradoxical. It starts as a fully personal choice and ends with the creation of a new subject of rights and responsibilities. Advances in reproductive genetics pose new ethical and legal questions. They are expected to prevent the transmission of genetic diseases to progeny and also to improve genetically-endowed mental and physical attributes. Genetic selection and enhancement may affect a child’s identity, as well as the parent-child relationship. The authors are committed to a pluralistic approach that captures all aspects of this relationship in terms of moral virtues and principles. They elucidate that most of the conflicts between parental preferences and a child’s rights could be resolved with reference to the meaning and nature of procreation.
1 Ethical standards of genetic counselling and reproductive autonomy
There is a gap between sequencing and analysing data; as Esther Dyson neatly summarized the problematic nature of sequencing the genome: ‘We know ninety words of Russian and we’ve been handed War and Peace’ (Dyson in Angrist 2010, 206). Even when we get genetic information, we usually do not know how to understand it and use it to improve health. What is more, the ability to predict diseases outstrips our ability to treat them. By taking reproductive choices, the parents are facing irreversible and difficult life-altering decisions, in particular when an abnormality of the foetus is detected. In order to enhance their ability for reproductive choices, genetic counselling has been established and its scope was extended to other branches of genetic testing (Biesecker 2003).1
1.1 The aims and the principles of genetic counselling
The main goals of genetic counselling are: (1) providing useful information (to deliver genetic information to the parents to help them make reproductive choices; to help them understand and personalize technical and probabilistic genetic information; to elucidate the consequences of their choice based on genetic information); (2) providing medical help (enhancing parental ability to adopt to the consequences of their choice including information about medical help and treatment); (3) providing education (exploring the meaning of the information in the light of personal values and beliefs of the parents promoting parental preferences and self-determination in exercising reproductive choice); (4) providing psychological assistance (helping to minimize psychological stress of the parents and...
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