Suchergebnisse

Gaining an understanding of how best to support the development of Aboriginal children is important in promoting positive social, emotional, educational, and health outcomes. The purpose of the current study was to identify the most important elements of healthy development for Aboriginal children, with a particular focus on social-emotional development. Focus groups were conducted with 37 Aboriginal Canadians, including parents, service providers, adolescents, and young adults. Five inter-connected themes emerged: cultural wellness, emotional wellness, mental wellness, social wellness, and strong identity, with strong identity described as central and foundational to the other themes. This study strengthens the assertion that Aboriginal children require an additional set of social-emotional skills to successfully navigate different cultural contexts during development. Implications for research and practice are discussed.

<i>Objective:</i> The purpose of our study was to evaluate the evidence on the prevalence of cytochrome P450 enzyme polymorphisms as potential genetic factors influencing drug efficacy and safety in the indigenous populations of the American hemispheres. <i>Methods:</i> We conducted a systematic review of studies published between 1985 and 2006 using the Pubmed database. <i>Results:</i> We identified only 10 original research studies on <i>CYP2A6, CYP2D6, CYP2C9, CYP2C19 </i>and <i>CYP2E1</i> in 13 indigenous American populations. Interethnic differences in the frequency of <i>CYP450</i> genetic variants existed both among the examined indigenous populations and in comparison with African, Asian and European populations. <i>Conclusions:</i> There are surprisingly few data on <i>CYP450 </i>enzyme polymorphisms in indigenous American populations, and it is difficult to draw any clear inferences about how these populations might be expected to respond to drugs in relation to other racial or ethnic groups. This lack of information could create a barrier to the use of pharmacogenetic testing in these populations. Collaborative partnerships between indigenous communities and researchers are needed to avail the clinical benefits of <i>CYP450</i> enzyme polymorphism testing to indigenous populations.

<b><i>Objectives:</i></b> Genomic information will increasingly be used to aid in the prevention, diagnosis, and treatment of disease. Several national initiatives are paving the way for this new reality, while also promoting new models of participant-engaged research. We compare the opinions of research participants in a cancer registry, human genetic researchers, and institutional review board (IRB) professionals about the return of individual-level genetic results (ROR). <b><i>Methods:</i></b> Online surveys were administered to participants in a cancer registry (<i>n</i> = 450) and overlapping questions were compared to our previous online national surveys of human genetic researchers (<i>n</i> = 351) and IRB professionals (<i>n</i> = 208). <b><i>Results:</i></b> The majority of respondents agreed that researchers have an obligation to return individual results when they would affect a participant's health. While 77% of registry participants favored ROR if the researcher feels the participant might be interested in the results, only 30% of the IRB professionals and 25% of the genetic researchers agreed with this statement. <b><i>Conclusions:</i></b> Significant differences emerged between the stakeholder groups in several ROR scenarios. Policies that are acceptable to participants, researchers and IRBs, and that ensure human subject protections and facilitate research are needed.

<b><i>Background:</i></b> With the arrival of large-scale population-based genomic research studies, such as the Precision Medicine Initiative (PMI), the question of how to best consent participants is significant, and in an era of patient-centered research, few studies have evaluated participants' preferences about re-consent and broad consent. Using quantitative methods, this study evaluates participants' views regarding the acceptability of re-consent and broad consent in subjects from the Participant Issues Project. <b><i>Methods:</i></b> A total of 450 participants were recruited from a cancer genetics registry, including cancer patients, their relatives, and controls. Participants completed a secure online survey. <b><i>Results:</i></b> Most participants endorsed re-consent when investigating an unrelated health condition or sharing their de-identified data with an investigator at a different institution. Notification rather than re-consent was preferred when studying a different gene but the same disease. Over 80% of respondents endorsed re-consent when parents of a child gave the original consent and the child has now reached adulthood. Preferences for some scenarios varied by history of cancer at baseline, gender, stage of cancer, or case versus control group. The large majority of participants preferred the option to select broad consent categories of research. <b><i>Conclusion:</i></b> Understanding research participants' preferences, including their views on the need for re-consent, are critical to the success of the PMI.

The recent expansion of human genetics research has raised complex ethical and regulatory issues. However, few published reports describe the views of professionals involved in human subjects protection (HSP) regarding the risks and benefits of genetic research. This anonymous, web-based study elicited the opinions of 208 HSP professionals about review of genetic research. The majority of respondents felt that different guidance is needed for various aspects of genetic protocol review compared with other types of human subjects research. Importantly, opinions were divided on specific genetic research issues, such as what constitutes human subjects research, when to re-consent, and the likelihood and risks of research participant identification. Findings from this study illustrate the need for a collaborative approach to ethics oversight in the review and conduct of genetic research.

<b><i>Background:</i></b> The practice of biorepository-based genetics research raises questions related to what ethical obligations researchers have to their participants. It is important to explore and include the thoughts of current biorepository participants as we move forward with this type of research. <b><i>Methods:</i></b> Thirty participants (17 cancer patients, 7 cancer-free controls, and 6 relatives) were drawn from the Northwest Cancer Genetics Registry and participated in qualitative interviews lasting between 45 and 90 min. Topics explored in this study include which types of genetic test results participants of large biorepositories expect and would like to receive from research analyzing their samples, as well as thoughts on best practice for conducting this type of research. <b><i>Results:</i></b> Cancer cases, controls, and first-degree relatives have differing views on what results they would like to receive from biorepository-based research. Participants across all groups attempted to balance the costs and benefits of returning individual research results. <b><i>Discussion:</i></b> In the wake of precision medicine, it is important to describe the range of ways participants in large biorepositories both think and talk about the utilization of their specimens for genetics research.