Non-disclosure preimplantation genetic diagnosis for Huntington's disease: practical and ethical dilemmas.
Level 5 - mechanism / opinion, no new human data
Narrative review and ethical analysis without empirical human data
PubMed 9949442 · doi:10.1002/(sici)1097-0223(199812)18:13<1422::aid-pd499>3.0.co;2-r
What was done
This narrative review and ethical commentary analyzed the practical and bioethical dilemmas surrounding prenatal diagnosis, prenatal exclusion testing, and non-disclosure preimplantation genetic diagnosis (PGD) for individuals at risk of carrying the Huntington's disease (HD) mutation.
What was found
The abstract reports no numerical or quantitative findings. It describes that while non-disclosure PGD allows at-risk individuals to avoid passing on the mutation without learning their own carrier status, it creates operational challenges in maintaining strict confidentiality across large IVF and diagnostic teams and raises ethical issues regarding procedural modifications or deception needed to preserve secrecy.
Why it matters
It articulates the clinical and ethical tensions between respecting a parent's right not to know their genetic risk for a late-onset disease and the practical realities of executing assisted reproduction protocols.
Limits
The abstract contains no empirical data, patient cohorts, or systematic search methodology, functioning solely as a narrative discussion and ethical analysis.
Cited by
- supports Preimplantation genetic testing for monogenic disorders (PGT-M) can test embryos for Huntington's disease using a non-disclosure protocol where the at-risk parent does not learn their own carrier status.