Biobank research faces many ethical challenges, such as obtaining valid consent from donors or dealing with incidental findings. Ethicists have long been engaged in the development of ethical standards to meet these challenges. However, it is often unclear if and how these standards are applied in practice. In our study we reviewed the scientific literature that has been published on biobank ethics. We found that only 25 out of 922 articles assessed how a specific ethical standard is applied in practice and made suggestions for further improvements. We conclude that more evaluation of practice is needed, so that ethical standards are not only defined, but their ultimate goal of making biobank research ethical can be ensured in practice. (By Holger Langhof, https://jmg.bmj.com/content/early/2018/11/21/jmedgenet-2018-105617 )
Practice evaluation of biobank ethics and governance: current needs and future perspectives
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