“Who owns your poop?”
As the field of human microbiome science grows, this provocative question is more valid today than ever! Check out this piece that we wrote for @sciencefsociety about ethical considerations in #microbiome research.
Imagine what happens if your ‘personal health information’ is made publicly available or the next time you give your blood or saliva sample and any additional information about your personal health is obtained and used without your consent, it would be a nightmare, right? Especially you won’t care much when you have to provide a “poop” sample and you think of it as just a “waste”. We bring you an interesting piece of blog by the Global Microbiome Conservancy team about the ethical considerations in microbiome research:
(If you haven’t read the first part of the blog, read it here)
“As scientists gain a deeper understanding of the complex ecology of microbiomes, this provocative question raised by Hawkins and O’Doherty almost 10 years ago is more valid today than ever, and could today be extended to “Who owns your gut bacteria?”.
Because the microbiome field is young, there is still uncertainty about the way microbiome samples should be legally considered. Such ethical and legal issues have been tackled in the past regarding the biobanking of other bodily material, such as blood. As more and more researchers are engaging into microbiome science that involves the sampling of feces-derived samples, we feel it is important to be proactive in facing upcoming ethical challenges.
Unlike blood or other tissues, human microbiome samples – mostly sampled via non-invasive methods by collecting poop – are usually not considered as human-derivative samples per se under legal considerations and are treated as waste. However, we know now that communities of gut microbes are strongly individualized, stable over time, and that they provide relevant information about their human host.
Because international legislation is not yet in place, we think it is essential to use the most conservative approaches and to implement the highest ethical standards at every level in our work. We, as a research community, have moral obligations to ensure society in general, and underrepresented populations in particular, that scientists protect the privacy and the rights of human subjects who consent to participate in research studies.
First, obtaining free and informed consent from every single subject is a prerequisite for any research study involving humans. This requirement is now standard worldwide and is controlled by ethic and research committees of all relevant institutions involved in research – including the Global Microbiome Conservancy (GMbC) work. For this, the inclusion of local collaborators is essential to ensure that consent forms respect the cultural traditions of each community, and that information about the research being conducted is appropriately transmitted. Furthermore, we consider that it should be the responsibility of scientific editors to ensure that appropriate ethical permits were obtained, and that participants were recruited with fair and meaningful consenting approaches.
Finally, we think that the question of ownership of microbiome samples is crucial. While being a difficult topic to address, establishing appropriate practices regarding who owns the samples and benefits from their use will help build trust between the research community and participating populations. We feel that this question should be addressed as soon as participants are consented. Indeed, microbiome samples that we collect may be used to develop new types of therapeutic products, which could result in large financial profits. To promote benefit sharing, and to make sure local participants have a say in setting up the benefit-sharing mechanisms, the GMbC documents guarantee that the ownership of microbiome samples and derivatives are retained by each participant.
Microbiome-based therapeutics may save millions of lives and improve human health in the future. While the GMbC consortium is eager to help advancing biomedical research, we strongly advocate for being ethically proactive to ensure that scientific and therapeutic advances never come at the expense of the participants that made it possible in the first place.”