Reasons for exclusion prenatale diagnosis or preimplantation genetic diagnosis in Huntington disease

Huntington disease is a neurodegenerative disorder with autosomal dominant
inheritance. Age at onset is usually at adult age. This devastating disorder
has great impact on genecarriers and their familymembers, also in the
presymptomatic phase.
Possible gene carriers, with 50% risk to be affected in the future, who do not
want to be informed about their carrierstatus, and who want to prevent
transmission of the disease to offspring, have the possibility to choose for
prenatal exclusion testing or for preimplantation exclusion testing. These
couples, but also health care workers and policymakers are confronted with
ethical and moral dilemma's regarding exclusion testing. This study aims to
explore motives for exclusion testing.

This study aims to get insight in reasons and motives of couples who choose for
exclusion prenatal or preimplantation genetic testing. We will explore
experiences of these couples in order to give recommendations for counseling
of future couples.
Futhermore, we will explore the choices the couples made and how they finally
fullfilled their childwish. Also, we will ask the couples for the reason why
they did not want te be tested in the past.

This is a retrospective cohort study of couples who underwent exclusion
prenatal testing or exclusion PGD. They will be asked to participate in a
semistructure interview (lasting one hour) concerning their reasons to choose
for this type of testing.

This study comprises one semistructured interview, lasting about one hour.
Probably adverse consequences of the interview may appear when sensitive,
difficult experiences are dragged up. The interviewer has a large experience
with Huntington disease and we expect that she will be capable to handle these
emotions. We guarantee adequate acute support and/or referral to a psychologist
if necessary.