The Right to Know and the Right Not to Know Revisited

CROL’s researchers, Professor Roger Brownsword and Jeff Wale have published a paper on the ‘right to know’ and the ‘right not to know’ in the Asian Bioethics Review (downloadable here).

Prompted by developments in human genetics, a recurrent bioethical question concerns a person’s ‘right to know’ and ‘right not to know’ about genetic information held that is intrinsically related to or linked to them. The paper revisits the claimed rights in relation to two particular test cases. One concerns the rights of the 500,000 participants in UK Biobank (UKB) whose biosamples, already having been genotyped, will now be exome sequenced; and the other concerns the rights of pregnant women (and their children) who undergo non-invasive prenatal testing (NIPT), a simple blood test that can reveal genetic information about both a fetus and its mother.