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<i>Objective:</i> To compare knowledge of and interest in genetic testing for hereditary colon cancer syndromes. <i>Methods:</i> Colorectal cancer patients, first-degree relatives of colon cancer patients and controls were recruited from a familial cancer registry. Focus groups explored attitudes about genetic testing. <i>Results:</i> All three groups conveyed interest in testing, but lacked knowledge about testing and its implications. After receiving information regarding the potential benefits and costs of testing (including insurance and employment issues) all three groups were disinclined to be tested. The reasons varied among risk groups. <i>Conclusions:</i> When informed about the costs and implications of testing, individuals may be reluctant to undergo genetic testing, regardless of baseline risk. Barriers to testing will vary depending on the perceived risk of carrying a mutation

AbstractObjectives. To compare cancer care among American Indian and Alaska Native (AIAN) patients with other racial groups. Methods. We used Washington State cancer registry records to identify 33,624 patients < age 65 diagnosed with local and regional stage breast, colorectal, and lung cancer from 1997 to 2003. Records were linked with regional tribal registry and Medicaid records to identify AIAN. Results. Enrollment in Medicaid at or after diagnosis was 50% for AIAN, 34% for Hispanic, 33% for black, and 18% for Asian/Pacific Islander compared to 13% of white cancer patients. AIAN were equally as likely as whites and other minority groups to receive surgery for breast and colorectal cancer, but significantly less likely (OR = 0.67) to receive surgery for lung cancer. Medicaid patients in general were less likely to receive surgery within 2 months of diagnosis, but AIAN were no less likely to receive timely surgery compared to other racial groups. Conclusion. AIAN rely more heavily than other racial groups on Medicaid for insurance after they are diagnosed with cancer. Issues associated with Medicaid enrollment, as well as non‐insurance related factors may account for delays in time to surgery and lower rates of lung cancer surgery among AIAN.

<i>Objective: </i>To determine from a large cohort of women eligible for screening mammography, the number who would meet criteria for genetic testing for hereditary nonpolyposis colorectal cancer (HNPCC). <i>Methods:</i> Detailed personal and family cancer histories, obtained from 6,682 women aged 50–80 years randomly selected from communities in Washington State, were matched to the Amsterdam criteria, Bethesda guidelines, and Japanese criteria for HNPCC. <i>Results:</i> One (0.015%) respondent met the Amsterdam criteria, 2 (0.035%) met the Japanese criteria and 5 (0.075%) met the Bethesda guidelines. <i>Conclusion: </i>Using the time of presentation for initial mammography as an opportunity to screen for HNPCC would detect very few families at high risk for this condition.

A key to accelerating the appropriate integration of genomic applications into healthcare in the coming decades will be the ability to assess the tradeoffs between clinical benefits and clinical risks of genetic tests in a timely manner. Several factors limit the ability of stakeholders to achieve this objective, including the lack of direct evidence, the lack of a framework to quantitatively assess risk and benefit, and the lack of a formal analytic approach to assess uncertainty. We propose that a formal, quantitative risk-benefit framework may be particularly useful for assessing genetic tests intended to influence health outcomes, and communicating the potential clinical benefits, harms, and uncertainty to stakeholders. As part of the development process for such a framework, a stakeholder meeting was held in Seattle (Wash., USA) in December of 2008, with the objective of discussing a risk-benefit framework, using warfarin pharmacogenomics as a case study. Participants engaged in focused discussion to elucidate the potential role of genetic test risk-benefit analysis in informing decision-making, categorizing genetic tests and directing research prioritization. This research investigation focuses on qualitative analysis of responses elicited from workshop participants during the proceedings of the workshop session. The major findings of the workshop were: (1) stakeholder support for risk-benefit modeling as a tool to structure discussion of the clinical utility of genetic tests; (2) desire for the modeling process to be iterative, transparent, and parsimonious in its presentation to stakeholders, and (3) some concern with the use of quality-adjusted life-years in the evaluation process. The meeting's findings emphasize the potential utility of risk-benefit analysis in genetic test evaluation, and highlight key areas for future research and stakeholder consensus-building.

Much has been written about the relationship between a person's high medical expenses and his or her likelihood of filing for bankruptcy, but the relationship between receiving a cancer diagnosis and filing for bankruptcy is less well understood. We estimated the incidence and relative risk of bankruptcy for people age twenty-one or older diagnosed with cancer compared to people the same age without cancer by conducting a retrospective cohort analysis that used a variety of medical, personal, legal, and bankruptcy sources covering the Western District of Washington State in US Bankruptcy Court for the period 1995–2009. We found that cancer patients were 2.65 times more likely to go bankrupt than people without cancer. Younger cancer patients had 2–5 times higher rates of bankruptcy compared to cancer patients age sixty-five or older, indicating that Medicare insurance and Social Security may mitigate bankruptcy risk for the older group. The findings suggest that employers and governments may have a policy role to play in creating programs and incentives that could help people cover expenses in the first year following a cancer diagnosis.