The identification of BRCA1 and BRCA2, two breast-ovarian cancer susceptibility genes, has brought many ethical and social issues to the forefront. This paper presents the results of a survey assessing the attitudes of 238 unaffected first-degree relatives of women with breast or ovarian cancer regarding the ethical issues of autonomy and confidentiality as they relate to BRCA1/2 testing. Baseline knowledge about BRCA1/2 and ethnic and psychosocial characteristics of our study population were examined to determine their association with women's attitudes. The majority of women (86-87%) felt that health care providers should not disclose the results of genetic tests for breast-ovarian cancer susceptibility to insurance companies or employers without written consent; however, only 56-57% felt that written consent should be required for a spouse or immediate family to receive this information. Ninety-eight percent of the women surveyed agreed that genetic testing for breast-ovarian cancer risk should be voluntary. Likewise, most women (95%) agreed that a person should be able to have genetic testing against a doctor's recommendation and 88% of the women surveyed agreed that parents should be able to consent to genetic susceptibility testing on behalf of their minor children. African American women were less concerned than Caucasian women about the protection of confidentiality in families, they were more likely to agree that an individual should still have access to testing when their physicians recommended against it, and they were more supportive of parents' rights to consent to genetic predisposition testing on behalf of their minor children. Women with coping styles characterized by higher optimism were more likely to favor access to genetic testing when a physician recommended against it, and to support parents' rights to consent to testing of their minor children. Therefore, the setting and manner in which genetic counseling and testing are delivered must be appropriately tailored to reflect these attitudinal differences and preferences.
59 Background: Incident learning is one of the most effective ways to improve quality care. To facilitate patient safety improvement at a national level, American Society for Radiation Oncology (ASTRO) and American Association of Physicists in Medicine (AAPM) launched RO-ILS: Radiation Oncology Incident Learning System in June 2014. RO-ILS mission is to facilitate safer and higher quality care through a shared learning environment that is secure and non-punitive. Methods: To ensure the security and protection of data, ASTRO contracted with Clarity PSO, a federally-certified patient safety organization that operates under the auspices of the Patient Safety and Quality Improvement Act of 2005. Radiation oncology practices sign a no-fee contract with Clarity PSO to participate in RO-ILS and then enter safety data into a customized web-based portal. Submitted data are analyzed and interpreted by the Radiation Oncology Healthcare Advisory Council (RO-HAC), a multi-professional team. Practices receive aggregate quarterly reports and institutional reports when substantial data are submitted. Results: During the first year, 61 US practices (123) facilities signed contracts. 42 practices entered 1259 events and 619 of these events (49%) were submitted to the national database. Types of events included: 242 (39%) incidents that reached the patient with or without harm; 206 (33%) near-misses; and 171 (28%) unsafe conditions. RO-HAC identified risk-prone processes including ineffective communication, compressed timelines to start treatment, changes to treatment during the course of therapy and junior practitioners’ errors not remedied by experienced staff. Conclusions: Data suggests that quality assurance processes were effective in catching errors; however, continued work needs to address the origin of these errors and suggest robust solutions. To facilitate improved communication, effective protocols and software enhancements are recommended to alert staff to changes in patients’ management. Policies and procedures on patient hand-offs, emergency cases and oversight of junior staff will help error mitigation. While in its infancy, RO-ILS provides useful data and will serve to improve the quality and safety of radiotherapy.
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