Genetic Risk: Whether, When, and How to Tell Adolescents

This study is being conducted to learn more about family communication of genetic risk information. Semi-structured interviews lasting up to one hour will be conducted with three populations: parent/child pairs at risk for Huntington's Disease, parent/child pairs at risk for hereditary cancer, and genetic counselors.

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Key information

Conditions

Huntington Disease Adnexal Diseases Basal Ganglia Diseases Brain Diseases Breast Diseases Breast Neoplasms Central Nervous System Diseases Chorea Cognition Disorders Colonic Diseases Colorectal Neoplasms Colorectal Neoplasms, Hereditary Nonpolyposis Congenital, Hereditary, and Neonatal Diseases and Abnormalities DNA Repair-Deficiency Disorders Dementia Digestive System Diseases Digestive System Neoplasms Dyskinesias Endocrine Gland Neoplasms Endocrine System Diseases Female Urogenital Diseases Female Urogenital Diseases and Pregnancy Complications Gastrointestinal Diseases Gastrointestinal Neoplasms Genetic Diseases, Inborn Genital Diseases Genital Diseases, Female Genital Neoplasms, Female Gonadal Disorders Hereditary Breast and Ovarian Cancer Hereditary Breast and Ovarian Cancer Syndrome Hereditary Cancer Hereditary Non-Polyposis Colorectal Cancer Syndrome Hereditary Non-polyposis Colon Cancer Heredodegenerative Disorders, Nervous System Intestinal Diseases Intestinal Neoplasms Mental Disorders Metabolic Diseases Movement Disorders Neoplasms Neoplasms by Site Neoplastic Syndromes, Hereditary Nervous System Diseases Neurocognitive Disorders Neurodegenerative Diseases Nutritional and Metabolic Diseases Ovarian Diseases Ovarian Neoplasms Skin Diseases Skin and Connective Tissue Diseases Urogenital Diseases Urogenital Neoplasms

Age range

15 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Johns Hopkins

Baltimore, Maryland, 21205, United States

About this study

The investigators currently lack an adequate understanding of how parents and children feel about genetic risk/status, how it is communicated, and how it influences wellbeing and family relationships. This understanding is vital in order for genetic counselors and other health care professionals to provide the best guidance possible to families. However, little research has been conducted on the impact of genetic risk information or testing on children from the perspective of the child. The research proposed here is uniquely positioned to help fill this gap.

For this study, the investigators will interview 15-20 parent/child pairs who are at risk for Huntington's Disease (HD), 15-20 parent/child pairs who are at risk for hereditary cancer, and 15-20 certified genetic counselors. Interviews will last no more than one hour and will be conducted at a time and place that is convenient for the participant. The investigators will offer participants a choice of conducting the interview in a private conference room at the Berman Institute of Bioethics, or remotely by Skype or telephone. Parents and children will be interviewed separately. Parents will be asked about the decision process behind how and when they disclosed genetic information to their child, style of family communication, advice for other parents in similar situations, and other questions related to the subject of communication of genetic information to minors. Children will be asked about their experience learning genetic risk information, style of family communication, how they felt, advice for other kids in similar situations, and other questions related to the subject of communication of genetic information to minors.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Parents at-risk for HD, affected by HD, or be the spouse/partner of someone living who at risk for or affected by HD.
Parents who have or have had a diagnosis of hereditary cancer, or the spouse/partner of someone living who has or has had had a diagnosis of hereditary cancer.
Children ages 15-17 who are at risk for either HD or hereditary cancer

Exclusion criteria

Parents and children who have not yet communicated about genetic risk
Children younger than age 15

Treatment and study plan

Primary outcomes

Qualitative analysis of how parents and children with either Huntington's Disease or hereditary cancer communicate about genetic risk information

Time frame: 1.5 years

Qualitative interview performed at one occasion where the patient describes when and how genetic risk information was disclosed to minor as well as perspectives from both parent and child.

Sponsors and collaborators

Lead sponsor

Johns Hopkins University

Other

Collaborators

National Human Genome Research Institute (NHGRI)

Registry information

Important dates

Study start: 2017
Primary completion: 2018
Study completion: 2018
First posted: Feb 5, 2018
Registry last updated: Feb 7, 2019

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed