2009a). For this paper, we narrow the focus to hereditary breast and ovarian cancer primarily due to its prevalence, especially in the literature, in much of the discussion surrounding the disclosure of risk information to family (intrafamilial or otherwise). In
an effort to guide policy development for health care professionals and encourage intrafamilial communication by patients, we have conducted a review of applicable norms and literature, followed by a consultation with key stakeholders. From this, we suggest selleck chemical the key points to consider underlying the above five themes for policy- and decision-makers to consider when formulating guidance in this area.
Methods Document collection The currently applicable normative frameworks surrounding intrafamilial communication of hereditary breast and ovarian cancer in Canada, France, Australia, USA, and UK were determined by reviewing the following classes of documents: (1) laws and regulations Selleckchem AZD2171 (provincial and federal) currently in force; (2) applicable case law; (3) guidelines and rules adopted by professional associations; (4) directives and guidelines adopted by hospitals and health care providers; and (5) policies adopted by patient advocacy groups. Relevant laws and regulations in force were identified by searches in official compendia of laws and regulation. Relevant case law was obtained by searching legal electronic databases such as SOQUIJ, QuickLaw, and WestlawCarswell. DOCK10 Relevant legislation examined concerned human rights and freedoms (particularly, privacy and protection of personal information), civil liability in general, duties of health professionals, children’s rights, parental rights and duties (family law), state duties towards parents and children in the provision of health care, and the related case law therein. Guidelines, policies, and recommendations published since 1995 were obtained by conducting
a review of HumGen.org (www.humgen.org/int/_ressources/Method_en.pdf, a database of laws and policies related to human genetics), keyword-driven searches of other databases including PubMed and Google, and searches of relevant organizational websites. Academic literature on intrafamilial communication of hereditary breast and ovarian cancer literature was obtained using internet search engines, specialized databases (e.g., PubMed, Philosophers’ Index, Kennedy Institute of Bioethics, and Google Scholar), libraries, and manual searches of relevant publication indexes and publications. All databases and search engines were searched using the following search terms: “famil*” [and] “genetic” or “cancer” [and] “communicat*.