Comments on Incidental Findings from the Presidential Commission for the Study of Bioethical Issues
Consultation response
The PHG Foundation has a long standing interest in the incidental findings that might arise through genetic and genomic testing. Our work on the expansion of newborn screening reviewed the potential for large-scale public health initiatives to generate incidental findings of non-paternity or carrier status.
Where screening can detect carriers of recessive diseases such as sickle cell anaemia, it remains a challenge to provide effective communication strategies that accurately inform participants of any health risks involved, without providing the potential for stigmatisation or discrimination.