Views of biobanking research among Alaska native people

http://www.ncbi.nlm.nih.gov/pubmed/22820223

Prog Community Health Partnersh. 2012 Summer;6(2):131-9.

Views of biobanking research among Alaska native people: the role of community context.

Hiratsuka V, Brown J, Dillard D.

Abstract

Background: 

Research using stored clinical data and samples held in biobanks has potential to address health disparities in minority communities. However, ethical and cultural considerations about use of these samples for research warrant attention. Literature about how Alaska Native people (ANs) view biobanking research consists largely of theoretical papers and position statements with limited systematic information gathered from a broad range of ANs.

Objectives: 

To explore the views of biobanking research among AN community members and leaders across Alaska using a community-based participatory research approach with tribal and federal partners.

Methods: 

We approached tribal health organizations (THOs) to partner and guide the study in their regions. Community liaisons were hired to lead study recruitment. Twenty-nine focus groups were conducted in 14 locations with participation from 82 community members and 81 tribal leaders. Data were analyzed using a grounded theory approach.

Results: 

We identified five themes that contributed to participants' views on biobanking: (1) Prior experiences with research and medical care, (2) stigmatizations, relevance, and applicability, (3) effects of governmental and cultural change, (4) concerns about unknown capability of future technologies, and (5) benefit for future generations. Respondents raised AN-specific cultural concerns along with global ethical concerns alongside the potential promise of research in improving AN health.

Conclusions: 

This study offers considerations for researchers partnering with AN communities when planning research and public health surveillance projects. Findings also have implications for other minority communities harmed by past research and other societal changes.

My coauthor, Erin Allen, and I touch on this in our recent article:

Pathology Case Reviews:

July/August 2012 - Volume 17 - Issue 4 - p 164–166

doi: 10.1097/PCR.0b013e318267517d

Toward Clarity in the Use of Human Tissue in Research

Allen, Erin Jae^,*; Allen, Timothy Craig MD, JD^†

Abstract: The issues of ownership of human tissue and individuals’ consent for its use in research are of national importance. Three influential court cases have determined that individuals do not retain a property interest in research tissues. The issue currently in question is what degree of individual understanding and informed consent is appropriate to both protect researchers from lawsuits for their use of human tissue in research, while simultaneously providing individuals and groups of individuals with the appropriate degree of understanding and informed consent. We present a 2-tiered approach that might resolve this issue.