The Ethics of Biomedical Research in Low Earth Orbit: The “Twins Study” on the International Space Station

• In Event: Constituting the Health Research Participant: Value, Assetization and Data Practices in Health Research

Abstract

The “Twins Study” is a comparative experiment involving NASA astronaut Scott Kelly, who spent 340 days on the International Space Station between 2015 and 2016, and his twin, retired astronaut Mark, who stayed on the ground and was subject to the same tests as his brother. The study, described as “the dawn of the era of omics in space”, involves ten areas of comparison between the subjects with an overall focus on epigenomic changes induced by long-term exposure to space conditions.

Spaceflight accelerates various forms of physiological deconditioning and, in this context, the “Twins Study” aims to gain a closer understanding of these processes involving, for the first time, subjects with identical genome. Biomedical research with astronauts involves particular ethical concerns considering the small sample sizes and the identifiability of the subjects, and this study deepened those concerns given the unique nature of the data. In response, program managers decided that the subjects would have a genetic councilor to understand the implications of the findings and to have the final word authorizing contents for publication.

Following the study, this paper examines how ethical issues were addressed in the configuration of the astronaut as a research participant as the investigators dealt with their own concerns regarding the management of samples, statistical significance, and the cumulative nature of their findings. The paper is based on interviews with the ten principal investigators of the study, NASA project managers, documentary analysis, and observations in scientific meetings where results from the study have been presented.

Author

• Paola A Castano, Cardiff University School of Social Sciences