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G02 Decision-making in predictive testing in huntington’s disease
  1. Federica Terenzi1,
  2. Camilla Ferrari1,
  3. Claudio Bartolozzi1,
  4. Francesco Rotella2,
  5. Elena Ghelli1,
  6. Eleonora Mascherini1,
  7. Eleonora Volpi1,
  8. Stefania Latorraca3,
  9. Silvia Bagnoli1,
  10. Benedetta Nacmias1,
  11. Silvia Piacentini1,
  12. Sandro Sorbi1,4
  1. 1Department of Neuroscience, Psychology, Drug Research and Child Health (NEUROFARBA), University of Florence, Florence, Italy
  2. 2Psychiatry Unit, Careggi University Hospital, Florence, Italy
  3. 3Neurology Department, Careggi University Hospital, Florence, Italy
  4. 4IRCSS Don Gnocchi, Florence, Italy

Abstract

Objective The protocol for genetic test in at-risk individuals for Huntington Disease provides a neurological examination and a psychiatric evaluation before to begin the psychological counseling, that provides to engage the client in at least two or more psychological session aimed to support the decision-making process.

The present study investigated the at-risk subjects’ decision to engage psychological counselling and to carry out genetic test.

Materials The collected data were obtained through the recruitment of people with HD and their families within the European Huntington’s Disease Network (EHDN). Using the EHDN Registry, data on clinical signs and symptoms of HD are collected together with the family history of the disease and the data obtained by neurocognitive tests and self-report questionnaires.

Methods One hundred and three individuals at risk for Huntington Disease have been included in the study, obtained from clinical data collected from 2007 and 2017 at the HD Center in Careggi Teaching Hospital. Data were manually retrieved from clinical records and included in a database for analyses.

Results Forty-four (42.7%) subjects, out of 103 at-risk individuals, decided to start the protocol and engaged on psychological counselling about decision making for genetic test.

Thirty-one (70.4%) subjects, out of 44 subjects who undertook the protocol, decided to carry out genetic test,while thirteen (30.6%) subjects decided to temporarily stop the psychological counselling.

Within our sample, 18 females (58%) have undergone genetic test, among them 13 (72,2%) were in reproductive period (average age of 29,4 years).

Discussion The study examined changes in decision-making for and against the predictive genetic test for Huntington’s disease during psychological counselling.

Our data highlight that a high proportion of subjects changed the initial decision of having the genetic test after psychological counselling, preferring uncertainty to the chance of a negative result.

  • genetic testing
  • predictive testing
  • genetic counselling

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