Keeping it in the Family: A Two-Part Exploration of Views on Cousin Marriages and Genetic Counselling

Abstract

A consanguineous marriage occurs between two people of close genetic descent. This practice is particularly common among Muslims in the form of cousin marriages, though it has historically taken place in many different communities, and in some cases, it still prevails in non-Muslim contexts. Though they take place among Muslims, there is no real religious basis for the practice; it is driven by social and cultural factors, as well as potentially misconstrued ideas of what the faith of Islam promotes. Reasons for practice vary across communities, with some specifying family ties, wealth, and ease of marriage.

The ancestral closeness between cousins in marriages has been associated with increased likelihood for offspring to develop diabetes, blood disorders, and other conditions. Hence, there is potential for medical harm to occur to children conceived in this partnership. Genetic counselling is a process whereby a couple is screened to assess the risk to any potential offspring. Reception to this process has been mostly positive, though with some caveats; studies have shown that there may lie the belief that whatever happens to offspring is at the will of a greater power, or that people are fearful of stigma or judgment, among other reasons for aversion to any part of the genetic counselling process.

The present work has two key aims and corresponding studies; a scoping review and qualitative analysis of views related to cousin marriages located on Reddit. First, given the social and cultural importance of cousin marriages and use of genetic counselling, study 1 is a scoping review conceived and carried out to determine the current research landscape for perspectives on genetic counselling for consanguinity. Following Arksey and O’Malley’s framework for scoping reviews, over 1300 articles were screened, ultimately leading to the extraction of data from 44 articles. Education, religion, and gender were found to be correlated with perspectives on genetic counselling for consanguinity. Furthermore, research gaps were identified: The vast majority of studies were quantitative in nature with very few being qualitative, leaving a gap in methodology and need to understand differences in perspectives. Locations of studies were mostly regionally focused to Muslim majority countries, leaving a gap related to geographic area and the practice of Muslims in non-majority countries where cultural norms may differ. Finally, only one paper incorporated theory in its explanation of perspectives, creating an opportunity to outline findings in relation to existing theoretical frameworks.

To address these gaps, a social media-based qualitative study was devised (study 2). The primary aim of this study was to analyse how people discuss cousin marriages and genetic counselling and inform how awareness of genetic counselling practices can be promoted for cousin marriages, enabling couples who are cousins to make educated choices about conception of children. Basing the study in social media allows for potentially varied perspectives from Muslims around the world rather than a small concentration of countries, and to get an understanding of the drivers of perspectives around genetic counselling for consanguinity, briefly drawing on relevant theory at a structural level to explain some findings (i.e. medicalization). The study involved scraping data from Reddit using the following subreddits: r/MuslimNikah, r/MuslimLounge, r/MuslimMarriage, r/Islam, r/Progressive_islam, and r/Islam_ahmadiyya. After data collection, the collected posts (and respective comments) were manually screened for relevance to addressing the study aim. Data were then analysed inductively using discourse analysis. Discourse analysis tends to be particularly focused on wording, arguments, and phrasing, so applying it in this case aided highlighting users’ discussion points surrounding cousin marriages and genetic counselling, aligning with the aim of the project. The results illustrate that while some users were against the practice of cousin marriages (i.e. expressing that practicers were akin to gamblers and irresponsible), those who were supportive of its practice or practitioners of it themselves cited dichotomies between religion and science, as well as fears of stigma towards their perspectives on cousin marriages. Those against cousin marriage cited comparisons between practicing cousin marriage and being ‘anti-science’. This shows the diversity in perspectives and underscores why further education and genetic counselling promotion is needed.

The data can be used to inform future efforts to tailor promotion awareness and education surrounding genetic counselling in ways that appeal to those who may not see the use of it or disagree with it due to cultural or religious beliefs. When aiming for behaviour change, there can be tensions between drivers of that change (i.e. health promotion) and factors such as ideology, religion, and culture. The data contain several examples of the way people think of such factors (i.e. equating scientific concern with being anti-God), and this can be of service in sensitive promotion of genetic counselling awareness.