Genetic counseling in a navajo hereditary nonpolyposis colorectal cancer kindred

Lynch, Henry T.; Drouhard, T.; Vasen, Hans F. A.; Cavalieri, Jennifer; Lynch, Jane F.; Nord, Suzanne; Smyrk, Thomas C.; Lanspa, Stephen J.; Murphy, Patricia D.; Whelan, Kathy L.; Peters, June A.; Chapelle, Albert de la

doi:10.1002/(sici)1097-0142(19960101)77:1<30::aid-cncr7>3.0.co;2-r

Cited by 32 publications

(11 citation statements)

References 8 publications

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“…For instance, it would be helpful to understand why more distant relatives showed more positive attitudes. Such a study might also support our anecdotal findings: in spending time with several subjects, we found, similarly to findings in a study of hereditary nonpolyposis colorectal cancer in the Navajo, some participants completely accepted a genetic explanation for their disease, while others believed in more traditional concepts such as curses (Lynch et al 1996). Due to the novelty of the information for many of our subjects, they may have had a difficult time separating an ultimate origin of the disease, such as God or fate, from a more immediate biological cause.…”

Section: Discussionsupporting

confidence: 90%

Genetic testing and counseling for hereditary neurological diseases in Mali

et al. 2011

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As genetic advances become incorporated into health care delivery, disparities between developing and developed countries may become greater. By addressing genetic health care needs and specific differences of developing countries, these disparities may be mitigated. We sought to describe the attitudes and knowledge of subjects with hereditary neurological diseases in Mali before and after receiving genetic testing and counseling for the first time. A questionnaire of attitudes and knowledge items was adapted and piloted for use in Mali. We found that the majority of subjects had positive attitudes toward genetic testing and counseling, both before and afterwards. Subjects responded to approximately half of the knowledge questions regarding hereditary transmission correctly before and after genetic testing and counseling. Neither overall attitudes nor knowledge scores changed significantly from baseline. Concerns about confidentiality were expressed by the majority of subjects. These findings indicate that, despite limited knowledge of patterns of inheritance, Malians understood the sensitive nature of this information and were favorable toward receiving genetic testing and counseling for diagnostic and prognostic purposes.

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Section: Discussionsupporting

confidence: 90%

Genetic testing and counseling for hereditary neurological diseases in Mali

et al. 2011

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“…Good inter-and intra-observer agreement was achieved for strong but not weak staining and the final results were based on strong staining counts only. The findings conflict with three previous reports, but agree with a fourth, the last being the only other study involving a genetically proven hereditary non-polyposis colorectal cancer family 15 . However, the last study examined only the overall labelling index within rectal biopsies and was based on a Navajo Indian family coming from a low-risk environmental background.…”

Section: Discussioncontrasting

confidence: 80%

Failure to detect colonic mucosal hyperproliferation in mutation positive members of a family with hereditary non‐polyposis colorectal cancer

et al. 1997

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Mucosal proliferation was studied in biopsies obtained from the ascending colon from four mutation positive members of a hereditary non-polyposis colorectal cancer family (group I) and compared to subjects with some positive family history of colorectal cancer but lacking the clinical and pathological features of hereditary non-polyposis colorectal cancer (group II). Labelling indices were derived through immunohistochemical staining of the cell cycle associated nuclear proteins proliferating cell nuclear antigen (PCNA) and Ki-67. Only perfectly longitudinally sectioned crypts were assessed and good intra- and interobserver reproducibility was demonstrated. The labelling indices and proliferative compartment locations were similar in both groups. The mean Ki-67 derived labelling indices (group I 18.0% and group II 17.5%) were similar to values obtained for normal subjects in other studies. PCNA derived labelling indices (group I 58.5% and group II 57.0%) were high, but probably reflect optimization of staining through methacarn fixation. The negative findings do not fit with most published data but critical appraisal of the literature indicates that they are likely to be correct.

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“…For example, with the help of a Spanish translator, the FIS proved to be successful in evaluating and counseling a large Lynch syndrome II kindred group in Uruguay 6 and, with a translator of the Navajo language, proved successful in an extended Lynch syndrome II kindred group on a Navajo reservation in Arizona. 7 Occasionally, one or more family members request permission to videotape the session so that they can make it available to their relatives who could not attend because of distance and/or incapacitation. This has proven to be successful.…”

Section: What Is the Family Information Service?mentioning

confidence: 99%