engaging populations with community-based participatory methodology
reporting in from the ACMG educational conference here in albuquerque, new mexico, i am particularly impressed by the conference organizers in bringing in a lot of local flavor into the meeting, and raising some important cultural issues and HBHE/public-health methodology! in particular, two entire sessions devoted to issues surrounding genetics research, engaging subject populations, provision of services, and perspectives of native americans.
in particular there was a session focused on native american perspectives of genetics and genetic research. of note, we heard from Johnson Dennison, a “medicine man” with the indian health services describe the side-by-side nature of traditional and western thoughts of care, and from two parents of children with disabilities/genetic conditions, speaking on behalf of their experiences as parents and advocates finding information about conditions and trying to bring together their separate beliefs of traditional healing and western medicine – something i’ve often though about personally with alternative/eastern medicine.
a separate session focused on Navajos and genetic disease. what particularly struck me was a talk by Murray Brilliant from the Marshfield Clinic, speaking about ways in which his group has been able to engage Navajos in genetics education to provide open forum for discussion of genetics and issues surrounding research.
of particular note was his experiences of being effective at engaging the Navajo peoples and getting their input and investment into the research. historically, incidences of studying diabetes in the Hopi and having zero benefit to the study population, or inappropriately using DNA from the Havasupai people, have created alarm in individuals when approached to be subjects of genetics research.
an interesting point is the Navajo Nation moratorium on genetic research that has existed since 2002, which i don’t plan on commenting on here, but is an important point of consideration for approaching local attitudes
Mr. Brilliant’s ultimate point was engaging the communities, finding community leaders and stakeholders to invest in the genetics education, creating true partnerships rather than only creating rewards for researchers, collaboratively planning, and ultimately, listening to the study populations.
this sounds a whole lot like CBPR (community-based participatory research) methods that i’ve heard so much about from my health behavior/health education training. in fact – this could truly be something that has yet to be thoroughly explored – using CBPR methods to garner trust and benefit the subject populations of genetic research.
in the past, perhaps identification of novel disease genes could have been seen as a “benefit” to populations. even learning more about ancestry in our american-minded culture is like a benefit. but one point that Mr. Brilliant made was with the Havasupai – whose cultural beliefs assert that they arose from the grand canyon area, when ancestry genetic studies report an asian origin. granted those ancestry studies were likely performed without direct consent for those studies, who are researchers really to publish/benefit from these studies when they may be in stark contrast from the interests of the subject population?
thus, engaging subject populations in manners that are respectful of their desires and needs may be the best way to address genetic studies.
what about genetic counseling research, or in clinical settings? perhaps many similar efforts could be used as well, even in acute settings. a poignant comment that one of the parent advocates that spoke about her perspective with a family with multiple disabilities and conditions, a genetic counselor’s enthusiasm to draw blood for clinical testing – may come as a shock to people that view their blood, their genetic information, their human blueprint as something they own and don’t want to give up. so even when pursuing genetic testing, exploring that option with clients, it would be very important to be clear what exactly the benefits are with the client, and to assess whether or not those benefits are perceived as benefits.