The value of written summaries of genetic consultations |
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| Affiliation: | 1. The Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA;;2. Department of Pediatrics, Division of Pediatric Genetic Medicine, Children’s Hospital at Montefiore and The Albert Einstein College of Medicine, Bronx, NY, USA;;3. Department of Pediatrics, Division of Pediatric Academic Medicine, Children’s Hospital at Montefiore and The Albert Einstein College of Medicine, Bronx, NY, USA;;4. Institute for Health Equity Research, Icahn School of Medicine at Mount Sinai, New York, NY, USA;;5. Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, NY, USA;;6. Molecular Diagnostics, New York Genome Center, New York, NY, USA;;7. The Charles Bronfman Institute for Personalized Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA;;8. The Children’s Cultural Center of Native America, New York, NY, USA;;9. Department of Emergency Medicine, Icahn School of Medicine at Mount Sinai at Mount Sinai, New York, NY, USA;;10. Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, NY, USA;;11. Department of Pediatrics, Icahn School of Medicine at Mount Sinai, New York, NY, USA;;12. Scientific Computing and Data Science, Icahn School of Medicine at Mount Sinai, New York, NY, USA;;13. Mindich Child Health and Development Institute, Icahn School of Medicine at Mount Sinai, New York, NY, USA;;14. Department of Obstetrics, Gynecology and Reproductive Science, Icahn School of Medicine at Mount Sinai, New York, NY, USA;;15. Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA. |
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| Abstract: | Many individuals who attend genetic counselling perceive themselves as having a duty to disseminate the information they obtain to other relatives. Given that individuals often experience difficulty in recalling the information they receive during consultations, it can be argued that there is a potential for the miscommunication of genetic information within families. This study investigated women's perceptions and use of written summaries of genetic consultations. 40 women were interviewed following their attendance at genetic counseling for breast/ovarian cancer. Attitudes about the written summaries and the dissemination of these summaries within the family are described. 92% said that the summary aided their understanding and/or recall of information. 85% said they had used, or intended to use, the written summary to facilitate the communication of genetic information to other biological relatives. Some potential disadvantages of the use of written summaries of genetic consultations will also be discussed. |
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