Burke, W. & Press, N. Genetics as a tool to improve cancer outcomes: ethics and policy. Nature Rev. Cancer 6, 476-482

Department of Medical History and Ethics, University of Washington, BOX 357120, 1959 North East Pacific, Room A204, Seattle, Washington 98195-7120, USA.
Nature reviews. Cancer (Impact Factor: 37.4). 07/2006; 6(6):476-82. DOI: 10.1038/nrc1890
Source: PubMed


Genetic research is rapidly increasing the opportunities for the detection of inherited cancer risk. Clinicians and policy makers must ensure the adequate evaluation of the benefits and harms of this new area of practice, address the challenges of family-based detection of individuals at risk and develop practice guidelines and educational strategies that are responsive to rapidly changing knowledge. When the benefits of testing are well established, efforts must also be made to ensure access to genetic services for all who can benefit.

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    • "The study also focused on the relationship between resource allocation and the legal and ethical duties of care owed by health care providers involved in the provision of genetic services in the context of resource allocation policies [4,6,19]. Respondents were asked, "Assuming patient consent, who makes the decision about whether a predictive genetic test will be done?" "
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    ABSTRACT: With a growing number of genetic tests becoming available to the health and consumer markets, genetic health care providers in Canada are faced with the challenge of developing robust decision rules or guidelines to allocate a finite number of public resources. The objective of this study was to gain Canadian genetic health providers' perspectives on factors and criteria that influence and shape resource allocation decisions for publically funded predictive genetic testing in Canada. The authors conducted semi-structured interviews with 16 senior lab directors and clinicians at publically funded Canadian predictive genetic testing facilities. Participants were drawn from British Columbia, Alberta, Manitoba, Ontario, Quebec and Nova Scotia. Given the community sampled was identified as being relatively small and challenging to access, purposive sampling coupled with snowball sampling methodologies were utilized. Surveyed lab directors and clinicians indicated that predictive genetic tests were funded provincially by one of two predominant funding models, but they themselves played a significant role in how these funds were allocated for specific tests and services. They also rated and identified several factors that influenced allocation decisions and patients' decisions regarding testing. Lastly, participants provided recommendations regarding changes to existing allocation models and showed support for a national evaluation process for predictive testing. Our findings suggest that largely local and relatively ad hoc decision making processes are being made in relation to resource allocations for predictive genetic tests and that a more coordinated and, potentially, national approach to allocation decisions in this context may be appropriate.
    Full-text · Article · Jul 2009 · BMC Medical Ethics
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    • "These findings highlight the importance of evaluating participant willingness a priori to receive such information and discussing implications of results. Several authors (Bookman et al., 2006; Burke and Press, 2006) have drafted guidelines regarding the selection of individuals for genetic testing and a program of individualized assessments to discuss testing and dissemination. Our study, which assessed the opinions of a subset of individuals from the Seattle C-CFR, was conducted as an initial step in this process of disclosure for participants enrolled in the cancer registry. "
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    ABSTRACT: Recent developments in genetic testing allow us to detect individuals with inherited susceptibility to some cancers. Genetic testing to identify carriers of cancer-related mutations may help lower risk by encouraging preventive behaviors and surveillance. This study assessed willingness of colon cancer cases and relatives to receive genetic information that may indicate an increased risk for cancer, to whom they would disclose genetic information, and whether receiving genetic test results may influence future prevention behaviors among individuals enrolled in the Seattle Colorectal Cancer Family Registry. Incident invasive colorectal cancer cases were identified from the Puget Sound Surveillance Epidemiology and End Results (SEER) registry. In 2007, a sequential sample of cases and relatives (n = 147) were asked to respond to a questionnaire addressing study aims. The questionnaire was administered during a baseline or 5-year follow-up interview. Patterns of response to each statement were similar between colorectal cancer cases and relatives. Both colorectal cases (95%) and relatives (95%) reported willingness to receive genetic information. Nearly all participants would tell their doctor the results of a genetic test (99% of cases; 98% of relatives), and all married participants would tell their spouses. Cases (96%) anticipated being slightly more likely than relatives (90%) to change their cancer screening behavior, but this difference was not statistically significant (p = 0.33). A high percentage of both colorectal cancer cases and relatives sampled from the Seattle Colorectal Cancer Family Registry are interested in identifying their genetic status, discussing their genetic status with their family and doctor, and adopting behavioral changes that may reduce cancer risk.
    Full-text · Article · Oct 2008 · Genetic Testing
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    ABSTRACT: Many studies have shown that organism is mostly sensitive to different influences in pre- and postnatal periods of ontogenesis. During the critical periods of development, these influences induce changes in the organism that relate to ontogenetic plasticity and lead to permanent changes in structure and function of different organs and systems of the organism. It is suggested that the main molecular mechanisms of so-called “ontogenetic programming” are based on changes that occur on the epigenetic level, including changes in the genetic expression not connected with modifications of DNA structure. The present review deals with experimental and epidemiologic evidences of the role of epigenetic processes in aging and determination of susceptibility to some age-related diseases, such as cancer, cardiovascular and neurodegenerative diseases, and insulin-independent diabetes. Keywordsage-related diseases–programming–aging–epigenetic modifications
    Full-text · Article · Jan 2011 · Russian Journal of Developmental Biology
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