Oligonucleotide theme.

The paper discusses the impact which recent advances in gene technology may have for people with intellectual disabilities. It highlights a conflict between the apparent benefits of advances in genetics for the population in general and the negative effects on persons with intellectual disabilities in particular. This conflict is illustrated in the paper through the use of examples, including the implications of a person's lack of capacity to consent to investigations and treatment; the issue of individual responsibility for antisocial behaviour when this is considered to have a genetic component; and the issue of life and death decisions about treatment in the face of a progressive, genetically determined, disorder. The authors adopt a human rights perspective to discuss these examples because it provides a richness to articulate and justify moral concerns in this area which is lacking in much of the current debate as this is dominated by the primacy of autonomy.

Human Genome Project↗

PubMed2003

On certainty, reflexivity and the ethics of genetic research into intellectual disability.

History seems to show us that any definition of intellectual disability (ID) including our current one has no timeless, certain validity, and that definitions are made only in ethical contexts. It is difficult to find a terra firma on which to discuss this sceptical claim alongside the claim to certain knowledge assumed in genetics and much of bioethics. Perhaps a transhistorical basis can be found instead in the motives of people constructing ID, and in the substratum of unconditionality in human relationships.

Human Genome Project↗