The challenges of international scientific collaboration in twin research

© 2018 Dr. Lucas Calais FerreiraTwin studies enable powerful approaches for untangling the roles of genes and the environment on human traits and conditions. Twin registries have been established across the globe since the 1950’s to facilitate twin studies through collecting and maintaining data and contact information of twins. International scientific collaboration in twin research represents an opportunity for establishing a large pool of twin data and expertise for analysis. However, such collaborations are rare. The International Network of Twin Registries (INTR) has, so far, failed to deliver large multi-registry twin studies that can tackle big problems related to the health of the population. I investigated the challenges of international scientific collaboration in twin research through a case study approach. To explore individual and interpersonal aspects of such challenges, I conducted 18 in-depth semi-structured interviews with researchers. To explore structural aspects, I studied the Brazilian Twin Registry (BTR), Twins Research Australia (TRA) and the INTR through participant observation. I also analysed documents, data reports and other information from the above case study sites. I found that these challenges can be grouped in three major themes: (1) the ‘silos’ in international twin research; (2) the capacity and the future sustainability of twin registries; and (3) ethical challenges in engagement, communication and policy-making. Striking differences in resources between researchers and twin registries operating in the global arena of collaborative twin research appeared as substantial obstacles. My findings also suggest that twin research is currently divided into silos related to the researchers’ disciplines, personal motivations and belief systems. While such silos are not necessarily detrimental to scientific productivity within disciplines, they represent barriers to the large-scale international twin studies that can achieve sufficient sample sizes for robust study outcomes. More importantly, while most informants appeared confident in the capabilities of co-twin control studies, especially those with MZ twin pairs discordant for disease, many of them seemed to question the validity and clinical relevance of classical twin studies. Classical twin studies have continuously influenced public discussion and policy-making debates related to a variety of human traits and conditions for almost 100 years. My findings have implications for the future of the BTR, TRA and, more broadly to other twin registries. They also contribute to possible future pathways for the INTR. However, the most significant contribution of my research pertains to how the misinterpretation of heritability estimates from classical twin studies by researchers and the media can lead to an agenda of genetic determinism. The confusion arising from the misleading communication of scientific findings from classical twin studies appeared as a major ethical challenge. These practices can also jeopardise the credibility of twin research as a tool to the understanding of the role of genes and the environment on human complex diseases. Researchers should take a proactive approach in helping educate the media, the public and policy-makers on what the findings from twin studies are really telling us, and perhaps even more importantly, what they are not