Recode Health Ethical Principles
1 media/Recode Health ethical principles_thumb.PNG 2022-04-03T08:44:45-07:00 Lynnee Argabright 5e34677fb40215fff81dbaad4ee2c305e4977a8e 40180 4 plain 2022-11-03T12:04:47-07:00 Nebeker, C., Ellis, R.B., Torous, J. (2019). Digital Health Checklist for Researchers (DHC_R) Accessed on 4/3/2022 from RECODE Health https://recode.health/tools CC-BY Lynnee Argabright 5e34677fb40215fff81dbaad4ee2c305e4977a8eThis page is referenced by:
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Introduction to Data Ethics
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Philosophically, there are 3 ethical principles for human subjects research. These principles are outlined in the Belmont Report, a federal work created in 1979 as a guide to protect human subjects in research and referenced often in IRBs. You won’t have to know these principles by heart, but understanding how these principles relate to people who underlie your data should help to guide any actions you take when sharing data.
Beneficence—Conduct research in ways that maximize benefit and minimize risk. Such as designing experiments with as little risk as possible.
Respect for persons—Treat people with consideration that they should make decisions in their best interests, and recognize some specific vulnerable groups do not have this power. Such as obtaining permission to share data about a person
Justice—Committing to distribute the benefit and burden equally across a population. Such as whether or not you should pay people for participating.
Some ways you can apply these principles as they relate to sharing data include:- Respect what was agreed upon in your participants’ Informed consent forms
- Share data and results back to the community of your population, and in a form they can use and understand
- Share data to reduce the duplicating burden on communities that tend to get reached out to frequently for research studies
- Consider how publishing or sharing may reinforce inequities, biases, and stereotypes about populations, so proactively learn about the context and populations of your topic and get input from those who’d bear risks.
- Conscientiously remove re-identification risk.
What we will not be getting into in this guide is data ethics as it relates to animals. But, be aware this is also a topic in relation to data ethics for data sharing! Sharing sensitive biodiversity observational data (such as geographic details about specific lions you’ve observed) could potentially impact poaching, disease spread, or habitat degradation! If you’ve heard of the IRB for protecting human subjects in research studies, the same office that handles IRBs in a university typically also has an Institutional Animal Care and Use application and research review board.
Sources
- Gaddy, M., & Scott, K. (2020). Principles for Advancing Equitable Data Practice [Report]. Urban Institute. https://www.urban.org/research/publication/principles-advancing-equitable-data-practice
- National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research [Report]. U.S. Department of Health and Human Services. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html
