Objectives: Review Huntington (HD) patients to identify ethical challenges complicating management.
Methods: Retrospective review of HD cases managed by Huntington Disease Services based in 2 cities.
Results: HD commonly presents ethical challenges in management.
A.Conflicts between rights to privacy and duty to disclose to others:
a)Unwillingness to disclose to at risk relatives, a partner even when contemplating pregnancy, non paternity to adult children.
b)Posthumous testing; how to disclose.
c)Implications of testing one identical twin or child of untested parent.
d)Testing a demented patient; when to inform relatives.
e)Affected patient in responsible position failing to inform employer.
f)Permission to communicate with parents refused by at risk or mutation positive minors.
g)Late life diagnosis; up to 4 generations at risk.
h)Insurance denied including when mutation negative.
i)Informing relatives of adopted patients of risk.
j)Consequences of 2 expanded alleles/anticipation.
B Management; capacity to make appropriate decisions and give consent.
a)Predictive testing; minors and intellectually disabled.
b)Protecting HD patients’ assets; gambling, misuse by others.
c)Impulsivity including marriage,shoplifting, violent crime.
d)Unsafe behaviours in insightless, demented patients.
e)Driving.
f)Refusing medical attention.
g)Instituting enduring power of attorney and guardianship.
h)Affected patient wanting IVF.
i)Possible child abuse by affected parent; informing authorities.
Conclusion: There are many challenges in managing HD. Situations encountered in HD management may apply to other later onset inherited disorders particularly those with behavioural changes and dementia.