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J Community Genet. 2019 Jan;10(1):109-120. doi: 10.1007/s12687-018-0365-5. Epub 2018 May 26.

Assessing patient readiness for personalized genomic medicine.

Author information

1
University of Utah, Salt Lake City, USA.
2
Lunenfeld-Tanenbaum Research Institute, Sinai Health System, University of Toronto, Toronto, Canada.
3
University of Melbourne, Melbourne, Australia.
4
Cancer Prevention Institute of California, Fremont, USA.
5
Columbia University, New York, USA.
6
University of Pennsylvania, Philadelphia, USA.
7
Fox Chase Cancer Center, 333 Cottman Ave., Philadelphia, PA, 19111, USA.
8
University of Chicago, Chicago, IL, USA.
9
Fox Chase Cancer Center, 333 Cottman Ave., Philadelphia, PA, 19111, USA. Mary.Daly@fccc.edu.

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.

KEYWORDS:

Breast Cancer Family Registry; Multigene panels; Next-generation sequencing; Personalized genomic medicine

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