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PGD and Embryo Selection

Report from an International Conference on Preimplantation Genetic Diagnosis and Embryo Selection

image of PGD and Embryo Selection

The prenatal screening technologies are there and will be refined and used. However, prospective parents should be given a broad picture, including information from families with similarly impaired children and from disabled adults, and then be supported in their own choice. Different parents will then make different choices. Dóra S. Bjarnason, in ”Is life worth living if you have a disability?” ”The best way to have talented children is still to choose a talented spouse. Parents usually only wish that their children are healthy. And if they are not, they accept them anyway.” Outi Hovatta, in ”The new reproductive biology medical and technical possibilities vs. ethical and legal concerns” ”In the future, stem cell lines may be created from an HLA-identical embryo as identified by PGD. This would be an alternative for parents with a sick child without taking any risks associated with the creative of a potential donor child, and it may work much faster and thus increase the chance of benefit to the sick child” Gisela Dahlquist, in ”The child’s perspective and the parents’ who should decide?” ”There seems to be a common perception about which foetal or embryo condition could justify selection. The regulation will point at severe disorders, however, without indicating specifically which disorders could be considered sufficiently severe.” Mette Hartlev, in ”Legislation and regulations in the Nordic countries. Is there a Nordic dimension?” ”Personally I hold the view that well-founded doubt about the rightness of our moral deliberations, practices and visions is always better than unjustified confidence and conviction, even when we strive to decipher the moral status of unborn babies and supernumerary fertilised eggs. Consequently, I feel it is justified to remain in doubt about the exact nature of their moral status.” Jan Helge Solbakk, in ”On the moral status of unborn babies and supernumerary fertilised eggs” ”In developing countries, particularly in an Islamic context where there is a high premium placed on couples having at least one male offspring, the availability of pgd for non-medical reasons does have a positive effect.” Zaid Kilani, in ”Preimplantation Genetic Diagnosis for Elective Sex Selection: Individual Needs in Developing Countries, Financial, Social, Cultural and Religious Aspects”

English

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Is life worth living if you have a disability?

I was invited to talk about life with disabilities and its value. The question given me "Is life worth living if you have a disability?" is on the surface almost a non question, but at a different level a deeply challenging one. I will start with the superficial elements of the question, then move on to talk about the social context of disability and how we can look at disability within society from the perspective of two broad models. I will share with you some findings of my research into the social construction of young disabled adulthood. I will apply the social model of the disability perspective and take both the concepts "adulthood" and "disability" to be socially constructed. The findings suggest that it is not diagnostic labels or degree of impairment, but social exclusion coupled with disempowerment that casts some of the young disabled people in the study into marginalized, socially oppressed "eternal childhood" roles, while inclusive processes coupled with adequate and flexible support counteract this. I will proceed by arguing for finding a balance in the use of the new prenatal technologies, and give you one example from my current study, which is a comparative study of three generations of parents of disabled children, and their experiences of professional and personal network support. My example is of a couple whose unborn child was found to have an impairment and the context they found themselves in when making their decision to have the child. In conclusion I will try and tackle the question; "Is life worth living if you have a disability?" from my perspective.

English

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