Title |
Assessing patient readiness for personalized genomic medicine
|
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Published in |
Journal of Community Genetics, May 2018
|
DOI | 10.1007/s12687-018-0365-5 |
Pubmed ID | |
Authors |
Caren J. Frost, Irene L. Andrulis, Saundra S. Buys, John L. Hopper, Esther M. John, Mary Beth Terry, Angela Bradbury, Wendy K. Chung, Katherine Colbath, Natalie Quintana, Elizabeth Gamarra, Brian Egleston, Nina Galpern, Lisa Bealin, Gord Glendon, Linda Patrick Miller, Mary B. Daly |
Abstract |
The Human Genome Project and the continuing advances in DNA sequencing technology have ushered in a new era in genomic medicine. Successful translation of genomic medicine into clinical care will require that providers of this information are aware of the level of understanding, attitudes, perceived risks, benefits, and concerns of their patients. We used a mixed methods approach to conduct in-depth interviews with participants in the NCI-funded Breast Cancer Family Registry (BCFR). Our goal was to gain a better understanding of attitudes towards different types and amounts of genomic information, current interest in pursuing genomic testing, and perceived risks and benefits. We interviewed 32 women from the six BCFR sites in the USA, Canada, and Australia. In this sample of women with a personal or family history of breast cancer, we found high acknowledgement of the potential of genetics/genomics to improve their own health and that of their family members through lifestyle changes or alterations in their medical management. Respondents were more familiar with cancer genetics than the genetics of other diseases. Concerns about the testing itself included a potential sense of loss of control over health, feelings of guilt on passing on a mutation to a child, loss of privacy and confidentiality, questions about the test accuracy, and the potential uncertainty of the significance of test results. These data provide important insights into attitudes about the introduction of increasingly complex genetic testing, to inform interventions to prepare individuals for the introduction of this new technology into their clinical care. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
United States | 2 | 67% |
Australia | 1 | 33% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 2 | 67% |
Scientists | 1 | 33% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Unknown | 46 | 100% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Bachelor | 20 | 43% |
Researcher | 4 | 9% |
Lecturer | 2 | 4% |
Student > Doctoral Student | 2 | 4% |
Student > Ph. D. Student | 2 | 4% |
Other | 3 | 7% |
Unknown | 13 | 28% |
Readers by discipline | Count | As % |
---|---|---|
Psychology | 19 | 41% |
Medicine and Dentistry | 4 | 9% |
Nursing and Health Professions | 3 | 7% |
Computer Science | 2 | 4% |
Biochemistry, Genetics and Molecular Biology | 1 | 2% |
Other | 4 | 9% |
Unknown | 13 | 28% |