Journal Entry Week 2 20220905 - klmartinez/DSF GitHub Wiki

The topics we covered this week that I found most relevant to my interests included the idea of Open Science, F.A.I.R. principles, C.A.R.E principles, and the concept of helicopter science.

Open science is a movement to make scientific data more accessible & equitable. Open science supports the sharing, preservation, provenance, and reproducibility of data, software, and scientific workflows. This idea is something I very much support and want to incorporate in my research. I found that this article that was shared - Incorporating open science practices into your lab - very helpful in formulating my first steps. The article Our path to better science in less time using open data science tools was also very helpful.

Complimentary to the idea of open science are F.A.I.R. principles which promotes findable, accessible, interoperable, and reusable practices in research. Most of my current projects is done using the AllofUs cohort which already promotes F.A.I.R. principles as all of the data is publicly available after registration and the methodology and code used is saved and made available on the AllofUs research workbench. However, I am also performing a project on a cohort that was already in my lab and this project scored very poorly when using the FAIR self assessment tool. This is something I am currently addressing by first submitting this study to dbGaP. It should also be noted that having a study follow F.A.I.R principles does not necessarily mean that it open data especially when dealing with PHI.

As important as F.A.I.R. principles are C.A.R.E. principles as described here. the C.A.R.E. principles are particularly focused on the collective benefit, authority to control, responsibility, and ethics. These concepts are especially important as research has historically and presently marginalized and exploited indigenous peoples. While my research doesn't usually focus on tribal-affiliated people specifically, many of my projects are utilizing the diverse cohort of AllofUs which includes data from tribal-affiliated individuals as well as other indigenous people from the Americas that are not affiliated with tribes (for example, many Latino individuals). Moving forward I need to take the time to thoughtfully examine if my research is supported by and benefits indigenous persons. I do not want to conduct and promote helicopter science - thoughtless research in marginalized populations with little involvement of local scientists or scientists that are part of these marginalized populations.