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.
Presidential Commission for the Study of Bioethical Issues