In the Western World, we may take it for granted that our scientific values and ethical concepts are universal, but this is not the case. Although international codes of conduct have been developed to ensure all scientists adhere to ethical practices, they are not always relevant, because not everyone shares the same worldview. Indigenous peoples, for example, have fundamentally different worldviews and philosophies, and do not subscribe to our scientific values.
Cross-cultural neuroethics aims to overcome potential misunderstandings that might arise when the worldview of researchers differs from that of the community they are investigating. Elana Brief of the National Core for Neuroethics at the University of British Columbia is involved in community-based participatory research, an approach that fosters collaboration between the investigators and their subjects, recognizing unique strengths that each brings to the work.
Brief works with the indigenous Canadian people, who have a high incidence of dementia due to an inherited mutation in the presenilin 1 gene that leads to early onset familial Alzheimer’s disease. Her colleague, Julie Robillard, discussed Brief's work during the second annual meeting of the Neuroethics Society, held in San Diego in November 2010. (See more about the meeting on the Neuroethics & Law blog.)
“We seek to ensure that aboriginal Canadians have the same access to dementia care that other Canadians have,” Brief said in an interview. “We also seek to deliver culturally appropriate information about the predictive test so that individuals and the community as a whole can make decisions that are right for them.”
“Some aboriginal Canadian elders refer to ‘YOUR dementia’,” she says, “meaning that they see Alzheimer’s as something of the dominant culture—its lifestyle, diet, and how Westerners interpret body signs and symptoms—and not in their traditional way of living. Dementia is not pathologized in the same way it is in our culture. They do not expect to have the same mental agility in their later years as they had as young people. An unfortunate consequence is that they are much less likely to seek care for the symptoms.”
The scientific method itself also conflicts with indigenous Canadian peoples’ worldview. Most scientists consider knowledge to be objective, evidence-based, and individualistic. It resides within individuals, and scientific research aims to obtain this knowledge from groups of individuals and natural phenomena, to construct an objective view of the truth. By contrast, many indigenous peoples view knowledge as relational—it is received and constructed from one’s relationships with other people, including that which is passed down from ancestors, and with the relationship with the natural world.
“Our collaborators felt strongly that we should be inquiring about community strengths in caring for people with dementia,” Brief explains. “Rather than taking a typical research approach by investigating the ‘gaps,’ such as looking for correlations between history of abuse and severity of symptoms, we are directing some of our attention to focus on, for example, how loving relationships within the community can alleviate the severity of symptoms.”
“We will also be including research participants in the interpretation of the data,” says Brief, “and we anticipate that their perspectives will deepen our understanding of the data, making the results more relevant and useful for the community and individuals. In the future we plan to use indigenous methods for research dissemination which may include vehicles like storytelling to share the findings.”
Defining a community
Confidentiality poses another ethical challenge to researchers working with indigenous peoples. Participants in academic studies are invariably anonymous, but in many Native cultures, not identifying oneself, one’s family, and one's homeland is unacceptable. Anonymity, they believe, undermines the cultural fabric of the community, and is akin to stripping its members of their traditions and beliefs.
On the other hand, public knowledge of the prevalence of the mutation within the indigenous Canadian population can lead to stigma from outside the community. For example, it might make it harder for people who are known to carry the mutation to get health insurance.
“We have an obligation to inform individuals and community representatives of the potential risks and benefits of disclosing the name of the community publicly,” says Brief. “Our idea of risk and benefit is embedded in our experience of being urban academics belonging to the dominant culture. Members of the community have different perspectives on the risk and benefit of divulging their identity so we are continuously revisiting the question of community confidentiality, and revising our own understandings of the potential harm and benefit to the community.”
Another obstacle to cross-cultural research is the question of ownership. Indigenous peoples do not view bodily tissues and genetic materials as being property of an individual. Rather, the individual is said to have stewardship over them, and many indigenous communities regard their removal as being harmful to either the individual or to the community as a whole.
In 1990, for example, the Havasupai Indians gave DNA samples to geneticists at Arizona State University, hoping to gain insight into the high incidence of diabetes in the tribe. Subsequently, it emerged that the researchers were also using the samples to study other things, including testing hypotheses of the Havasupai’s origins that conflicted with the tribe’s traditional cultural stories. After a 6-year legal battle, the university returned the samples and paid a settlement totaling $700,000 to members of the tribe.
The case highlights the need for full consent and transparency when undertaking research with indigenous peoples, as with all other groups. Researchers need to understand that in some cases the samples they obtain are considered to be sacred, according to the peoples’ cultural heritage, and that they need to conduct their research in a way that honors the cultural fabric, beliefs, and traditions of the participants.
“Our research has the potential to be transformative for both the community, in making bridges to mainstream dementia care, and for the dominant culture, in reconsidering Western interpretations and expectations of aging,” Brief says. “As we learn more about this community’s perspectives on dementia and Alzheimer’s disease, we can share the findings with the medical community so that they can offer culturally appropriate care.”