Role of Culture and Issue of Autonomy and Informed Consent

Author: Alice Yick Flanagan, Ph.D.

When conducting research with other cultural groups and those from racial and ethnic minority groups, it is important for researchers to take into account how culture impacts conducting ethical research. The definition of the term “culture” is complex because it is multilayered and not necessarily static but dynamic. Culture can be defined as the group’s value systems which comprises of the sanctioned behaviors and rules of conduct (Gordon, 1964; Lum, 1999). It also involves language, ways of thinking, worldviews, attitudes and religious, social, institutional, community, and familial beliefs that are passed from generation to generation within a group (Hodge, Struckerman & Trust, 1975; Sue, 1981).

 

In this blog, we will focus on the how culture can color the issue of autonomy and how it applies to informed consent. The Belmont Report identifies three main principles to guide ethical research. Let us focus on the first principle which is respect for persons. According to the Belmont Report, “respect for persons incorporates at least two ethical premises: first, individuals should be treated as autonomous agents, and second, that persons with diminished autonomy are entitled to protection.” When conducting ethical research, this translates to the principle that the individual can exercise self-determination and make decisions whether he/she wants to participate. The individual should not in any way feel he/she was coerced into participation. Therefore, the informed consent form is meant to communicate all the information for the research participant to make an informed decision about his/her participation in the study. For those who are not able make such decisions, mechanisms must be in place to protect these individuals.

 

In Western societies such as the United States, self-determination and autonomy are held paramount. That is because Western societies emphasize first-order autonomy, which promotes self-determination (Hanssen, 2004). However, there is another category of autonomy: second order autonomy, where decision-making is group oriented. Typically, this will apply to more collectivistic cultures, and the decision-maker is designated by the group (Hanssen, 2004). For example, often times, with research that involves Native Indian tribal groups or indigenous groups, the community leader, elders, grandparents and/or other relatives have to provide the consent versus the individual (Ruiz-Casares, 2014). In Asian immigrant groups where they adhere to traditional and patriarchal norms, there may be a male designated family member who needs to be consulted when making major decisions (Chittem & Butow, 2015).

 

The informed consent form might have different cultural meanings. In some cultures, for example, putting a signature on a piece of paper implies that the activity is associated with a major life circumstance or legal matter (Rashad, MacVane & Haith-Cooper, 2004). Requiring research participants in certain cultural groups to put a signature on a consent form may also implicitly convey a lack of trust especially if they feel that a verbal consent is adequate (Lloyd, Johnson, Mughal, Sturt, et. al., 2008; Rashad et. al., 2004). Sometimes, asking immigrants to sign a consent form may be off putting to them because they are afraid that the signature can be traced to the fact that they are illegal residing in the country, fearing deportation (Piamjariyakul, Myers, Werkowitch & Smith, 2014).

 

How do these concepts apply to researchers aiming to conduct ethical and culturally sensitive research? Here are some thoughts:

 

1. Consult with cultural brokers who can provide you with culturally relevant information to inform your decisions about specific sampling and data collection procedures.
2. Are there specific gatekeepers in the community that you need to identify and obtain permission to conduct the study? Do they serve as the person who provides consent for the entire group?
3. Does it make sense to request a waiver of a signature for the consent form from your IRB? If so, make sure you provide the IRB information about the cultural context and the reasons why you are requesting this waiver.
4. Does it make sense for you to request a waiver for consent given the local cultural context? If so, make sure you provide the IRB information about the cultural context and the reasons why you are requesting this waiver.
5. Avoid as much technical jargon in the consent forms as possible so that it does not sound like a legal document. As much as possible, make it reader friendly.

 

 

 

 

References

Chittem, M. & Butow, P. (2015). Responding to family requests for nondisclosure: The impact of oncologists’ cultural background. Journal of Cancer Research & Therapeutics, 11(1), 174-180.

 

Gordon, M.M. (1964). Assimilation in American life. New York, NY: Oxford University Press.

 

Hanssen, I. (2004). An intercultural nursing perspective on autonomy. Nursing Ethics, 11(1), 28-41.

 

Hodge, J.L.; Struckmann, D.K. & Trost, L.D. (1975)/ Cultural bases of racism and group oppression. Berkeley, CA: Two Riders Press.

Lum, D. (1999). Culturally competence practice. Pacific Grove, CA: Brooks/Cole.

Piamjariyakul, U; Myers, S; Werkowitch, M. & Smith C.E. (2014). End-of-life preferences and presence of advance directives among ethnic populations with severe chronic cardiovascular illnesses. Journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology, 13(2), 185-189.

 

Ruiz-Casares, M. (2014). Research ethics in global mental health: Advancing culturally responsive mental health research. Transcultural Psychiatry, 51(6), 790-805.

 

Sue, D.W. (1981). Counseling the culturally different: Theory and practice. New York, NY: John Wiley & Sons.