Protecting communities in research: current guidelines and limits of extrapolation.

Nat Genet

Department of Bioethics, Dalhousie University, Halifax, Nova Scotia, Canada.

Published: November 1999

As genetic research increasingly focuses on communities, there have been calls for extending research protections to them. We critically examine guidelines developed to protect aboriginal communities and consider their applicability to other communities. These guidelines are based on a model of researcher-community partnership and span the phases of a research project, from protocol development to publication. The complete list of 23 protections may apply to those few non-aboriginal communities, such as the Amish, that are highly cohesive. Although some protections may be applicable to less-cohesive communities, such as Ashkenazi Jews, analysis suggests substantial problems in extending these guidelines in toto beyond the aboriginal communities for which they were developed.

Download full-text PDF

Source
http://dx.doi.org/10.1038/15455DOI Listing

Publication Analysis

Top Keywords

aboriginal communities
8
communities
6
protecting communities
4
communities current
4
guidelines
4
current guidelines
4
guidelines limits
4
limits extrapolation
4
extrapolation genetic
4
genetic increasingly
4

Similar Publications

Introduction: Decentralized molecular testing for infectious disease diagnosis at the point-of-care (POC) is critical to address inequities in access to timely, informed health care. The COVID-19 pandemic accelerated the demand, development and adoption of POC tests for infectious diseases globally. This has provided opportunities to maximize the individual benefits and public health impact of POC testing, particularly in remote and resource-limited primary care settings.

View Article and Find Full Text PDF

Purpose: To understand diversity, inclusion, and capacity of genetic counselors (GCs) in Australasia (Australia and New Zealand).

Methods: Individuals with or working toward a GC qualification in Australasia were invited to complete an online survey, between November 2022 and March 2023. Quantitative data were analyzed using descriptive statistics, 1-sample proportion -tests, 2-sample -tests, and χ tests.

View Article and Find Full Text PDF

Background: The siloed nature of the health and social service system threatens access for clients engaging numerous organisations. Many Aboriginal and Torres Strait Islander people face adverse circumstances which contribute to multiple health and social needs. Effective relationships between health and social services are integral to coordinated service provision to meet the diverse needs of Aboriginal and Torres Strait Islander clients.

View Article and Find Full Text PDF

Background: A culturally responsive health workforce is essential to ensure the delivery of culturally safe health services that meet Aboriginal and Torres Strait Islander Peoples needs. In partnership with universities, placement providers play an essential role in creating opportunities for immersive experiences that enable students to develop their cultural responsiveness. This study evaluated students' experiences of an innovative student placement model embedded within an urban Aboriginal and Torres Strait Islander Community-Controlled Health Organisation.

View Article and Find Full Text PDF

Background: Despite the benefits of rural placements in attracting healthcare professionals to rural areas, there remains a gap in understanding the specific impact of placements in remote and very remote areas of Australia, particularly within the unique context of the Kimberley region. There is a need to elucidate differences across geographical areas and contribute to the knowledge about the specifics of where and how student placement programs work. This research explored the impact of a remote placement program at Majarlin Kimberley Centre for Remote Health ('Majarlin') on educational outcomes and workforce intentions of participating students.

View Article and Find Full Text PDF

Want AI Summaries of new PubMed Abstracts delivered to your In-box?

Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!